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# UDNF

Until rare is not a barrier

## Sitemaps

- [XML Sitemap](https://udnf.org/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Registration is Open - Undiagnosed Exchange](https://udnf.org/registration-is-open-undiagnosed-exchange/) - July 22, 2026 About The Undiagnosed ExchangeThe Undiagnosed Exchange is a virtual, facilitated, small group intended to provide support and education for persons or caregivers going through a diagnostic odyssey. There is no fee associated with participating in this group. The facilitators have both been through a diagnostic odyssey and they will lead the group
- [Community Councils Update](https://udnf.org/community-councils-update/) - July 2, 2026 Our volunteer-driven Community Councils have been busy. Check out their incredible progress. Support Council Update Thanks to an initiative from the Support Council, patients and families can nominate the medical providers who have made a real difference in their care. The highest-scoring nominees will be honored by the UDNF. Nominate your favorite
- [UDNF Undiagnosed Day 2026](https://udnf.org/udnfundiagnosedday2026/) - April 29, 2026 We invite you to our Undiagnosed Day 2026 on Wednesday, April 29th at 12:30 p..m. ET. The UDNF will celebrate Undiagnosed Day 2026 on April 29 with a virtual event to share knowledge, build community, and take action. It is time for us to have the voices of the undiagnosed heard, and for us
- [Introducing Indigo the Bunting: Your Songbird](https://udnf.org/indigo/) - Introducing Indigo the Bunting: Your SongbirdIndigo the Bunting is a symbol created by and for the undiagnosed community. We know that for those of you still searching for answers—still navigating tests, specialists, symptoms that do not fit neatly into one box—it can feel incredibly isolating.Indigo represents your story and experiences living with an undiagnosed disease.
- [Give](https://udnf.org/give/) - Together we can deliver support, answers and improved outcomes for people living with rare and undiagnosed diseases. Your donation will:Connect patients to navigators and supportAdvance research into rare and undiagnosed conditionsPush for faster, more accurate diagnosesGrow a stronger, more connected communityWe can’t do it without you. When you give to UDNF, you’re not just making
- [Stocks and Securities](https://udnf.org/stocks-and-securities/) - Benefits of Gifts of Appreciated Securities Investors who have owned an appreciated stock or mutual fund for more than one year can donate those securities to a charity and receive a tax deduction for the fair market value of the securities and eliminate any capital gains assessments on the future sale of the securities. We
- [Jessica Eddings](https://udnf.org/jessica-eddings/) - A mother shares her family’s five-year search for answers to their daughter’s undiagnosed genetic condition—and the unexpected call that changed everything.
- [Expand Our Roots Branch Leader Fundraising Toolkit and Resources](https://udnf.org/expandourrootstoolkit/) - Support UDNF's Branches of Hope campaign today!
- [Meet Our New CEO](https://udnf.org/welcome-danielle-carnival/) - We’re excited to welcome Danielle Carnival, Ph.D., as our new CEO of the UDNF! She brings not only deep expertise in science and policy, but a heartfelt commitment to listening, learning, and working with the rare and undiagnosed communities.
- [Danny Miller](https://udnf.org/danny-miller/) - Our first son Carson was born in 2011, and our diagnostic odyssey began just a few months later when we began to notice that his developmental milestones weren’t quite tracking with other kids his age. His movements seemed stiff and jerky, and he had trouble rolling over and sitting up. After several visits to the
- [Mayra Ramos](https://udnf.org/mayra-ramos/) - As parents, all we want is for our kids to be happy and healthy. Unfortunately, that is not always how things turn out. My name is Mayra and I have three beautiful children. My oldest is 18, my middle child is 14, and my baby is 8. All three of my pregnancies and labors were
- [Sanam Kadhoda](https://udnf.org/sanam-kadhoda/) - Eli is a very energetic and playful kid! He loves Superheroes! His favorite characters are the PJ Masks, and he loves to run around the house imitating them. Eli is the most loving and pure child. He LOVES hugs and kisses and asks for them frequently. He loves to love! To know Eli is to
- [Luke Shantz](https://udnf.org/luke-shantz/) - I prefer to start my story from the end, because who doesn’t like a happy ending. Right? Or at least an ending in which the bad guy doesn’t win. I enjoy life with my service dog Sophie, spending winters in tropical Colombia and summers on an island near Seattle, WA. I am in my third
- [Statement on Rare Disease Day, Research and Funding](https://udnf.org/udnf-statement-on-rare-disease-day-2025-cancellation-research-funding-and-policy-impacts-on-the-ultra-rare-and-undiagnosed-community/) - UDNF Statement on Rare Disease Day 2025 Cancellation, Research Funding, and Policy Impacts on the Ultra-Rare and Undiagnosed Community
- [UDNF December 2024 E-News](https://udnf.org/udnf-december-2024-e-news/) - Read the December E-News HighlightsAdvancing Hope: A Year of Research Progress in Undiagnosed and Ultra-rare DiseasesUntil Rare is Not a Barrier: How Your Donation HelpsHelp Make the Impossible Possible
- [Research](https://udnf.org/udnf-research/) - At UDNF, we’re committed to transforming the lives of individuals affected by undiagnosed and ultra-rare diseases. Our research strategy prioritizes:Accelerated Diagnosis: Providing rapid and accurate diagnostic tools to ensure timely identification of these complex conditions.Innovative Research: Driving groundbreaking research to develop effective treatments and cures.Equitable Access: Ensuring that all patients, regardless of their geographic location
- [UDNF November 2024 E-News](https://udnf.org/udnf-november-2024-e-news/) - Read the November E-News HighlightsUndiagnosed. Ultra-rare. United. UDNF Community Events 2024 Wrap-upThe UDNF public statement for the FDA Rare Disease Innovation HubCelebrating Cargivers Month with Jessica Patay from We Are Brave Together
- [UDNF October 2024 E-News](https://udnf.org/udnf-october-2024-e-news/) - Read the October E-News HighlightsUndiagnosed. UIltra-rare. United. UDNF Community EventsHeartfelt letters written by current and past UDNF PEER members
- [UDNF September 2024 E-News](https://udnf.org/udnf-september-2024-e-news/) - Read the September E-News Highlights Undiagnosed. UIltra-rare. United. UDNF Community Events Patient Navigator Program Highlights
- [UDNF August 2024 E-News](https://udnf.org/udnf-august-2024-e-news/) - Read the August E-News HighlightsIn this month’s e-news: Learn why obtaining a diagnosis is so challenging for those with medical mysteries, the UDNF participates at the NINDS Nonprofit Forum, and the announcement of our participation in the Librarey ambassador program.
- [UDNF July 2024 E-News](https://udnf.org/udnf-july-2024-e-news/) - Read the July E-News HighlightsIn this month’s e-news: The UDNF at the Bio International Convention, Patient Navigator Program highilights, and a mom’s story of balancing the needs of her healthy children while caring for her child with a chronic illness.
- [Undiagnosed Diseases Network Foundation Strategic Plan 2023-2025](https://udnf.org/undiagnosed-diseases-network-foundation-strategic-plan-2023-2025/) - Dear Friends and Supporters:It is with great enthusiasm and a deep sense of purpose that I introduce to you our Strategic Plan for the years 2023 to 2025. Our mission is clear: to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions. The UDNF has emerged as a beacon of
- [Connect, Learn, and Inspire at the RARE Advocacy Summit](https://udnf.org/connect-learn-and-inspire-at-the-rare-advocacy-summit/) - Global Genes RARE Advocacy Summit Join Undiagnosed Diseases Network Foundation at the Global Genes RARE Advocacy Summit (formerly known as the Patient Advocacy Summit) September 19-21 at the Sheraton San Diego Hotel & Marina. This event aims to unite stakeholders from various sectors within the rare disease community, focusing on patients and patient advocates. It
- [Undiagnosed Diseases Network Foundation Receives $2.5 Million Grant to Launch Patient Navigation Program](https://udnf.org/undiagnosed-diseases-network-foundation-receives-2-5-million-grant-to-launch-patient-navigation-program-2/) - Washington, DC – The Undiagnosed Diseases Network Foundation (UDNF) announced today that it has received a $2.5 million grant from the Chan Zuckerberg Initiative (CZI) to launch a patient navigation and support program. The program will provide one-on-one case management to patients and families with undiagnosed and ultra-rare diseases, guiding them through the diagnostic and
- [Urgent Action Needed: Support Funding for the UDN](https://udnf.org/urgent-action-needed-support-funding-for-the-udn/) - By Adaline Dunnberg | June 19, 2023Your voice and actions matter! We need your immediate assistance in advocating for continued funding for the Undiagnosed Diseases Network (UDN). As the House and Senate finalize their 2024 budgets, we must ensure that the UDN receives the necessary support to continue its vital work in diagnosing and providing hope to
- [UDN PEER and UDNF Integrate Efforts to Strengthen Voice of UDN Participants](https://udnf.org/udn-peer-and-udnf-integrate-efforts-to-strengthen-voice-of-udn-participants/) - The Undiagnosed Diseases Network Patient Engagement and Advocacy Resource (UDN PEER) and the Undiagnosed Diseases Network Foundation (UDNF) are integrating efforts to amplify the voice of patients and participants in the undiagnosed and ultra-rare disease communities.UDN PEER, a group of patients and family members who have participated in the UDN, supports UDN participants and family
- [Tell Me More: Meeting Unmet Needs: UDN Peer Meets the UDNF](https://udnf.org/tell-me-more-meeting-unmet-needs-udn-peer-meets-the-udnf/) - March 22, 2024 We invite you to our next UDNF Lecture Series on Friday, March 22nd at 12:00 p..m. ET for Meeting Unmet Needs: UDN Peer Meets the UDNF. Our goal is to make these sessions informative and interactive, to give you a chance to learn more and to find support among others in the
- [Undiagnosed Diseases Network Foundation (UDNF) Launches Patient Navigation Program](https://udnf.org/undiagnosed-diseases-network-foundation-udnf-launches-patient-navigation-program/) - WASHINGTON, D.C. (Feb. 6, 2024) – The Undiagnosed Diseases Network Foundation (UDNF), a patient-led nonprofit organization committed to improving access to diagnosis, research, and care for people with undiagnosed diseases, today launched its Patient Navigation Program to connect undiagnosed or ultra-rare disease patients and their loved ones to services and care experts who can assist
- [UDNF March 2024 E-News](https://udnf.org/udnf-march-2024-e-news/) - Read the March E-News HighlightsNavigating Ultra-rare Diseases and How the UDNF HelpsFebruary Together on Tuesdays Wrap-up: What is a Patient Navigator?Upcoming Events
- [UDNF November 2023 E-News](https://udnf.org/udnf-november-2023-e-news/) - Read the November E-News HighlightsUDNF Live Online EventUpdate on Patient Navigation ProgramSign Up for E-NewsGiving Tuesday is Coming Up Soon!Let’s Make the Impossible Possible
- [UDNF April 2024 E-News](https://udnf.org/udnf-april-2024-e-news/) - Read the April E-News HighlightsUndiagnosed Day EventsRare Disease Day Wrap-UpExciting News About UDN Funding
- [UDNF May 2024 E-News](https://udnf.org/udnf-may-2024-e-news/) - Read the May E-News HighlightsFor Mother’s Day, we wanted to honor and recognize moms who are facing the unknown. We asked moms in our UDNF community to share how living with an undiagnosed or ultra-rare disease has shaped their journey through motherhood. Inside this e-news are some of those stories.
- [UDNF PEER Newsletter -  June 2024](https://udnf.org/udnf-peer-newsletter-june-2024/) - Read the June E-News A Note from the Editor In our June Newsletter we are excited to highlight the UDN Site at University of Alabama at Birmingham (UAB). We welcome you to read articles from Bruce Korf, the Principal Investigator, Kaitlin Callaway, and Tammi Skelton, both site coordinators at UAB discussing barriers to the diagnostic
- [Book Launch - Everything No One Tells You About Parenting a Disabled Child](https://udnf.org/book-launch-everything-no-one-tells-you-about-parenting-a-disabled-child/) - August 22, 2024 We invite you to our book launch of Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports on Thursday, August 22nd at 12:00 p..m. ET.Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports is a
- [What is Palliative Care, REALLY?](https://udnf.org/what-is-palliative-care-really/) - September 3, 2024 We invite you to our next UDNF Together on Tuesdays series on Tuesday, September 3rd at 12:00 p..m. ET for What is Palliative Care, REALLY? What is Palliative Care REALLY?What is palliative care, REALLY? Hospice care? Concurrent care? Too often, these services are misunderstood, creating fear and anxiety in families and hesitancy by
- [Tell Me More: Why is Obtaining a Diagnosis Challenging?](https://udnf.org/tell-me-more-why-is-obtaining-a-diagnosis-challenging/) - July 11, 2024 We invite you to our next UDNF Tell Me More Lecture Series on Thursday, July 11th at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. Are you an undiagnosed patient who has been on a long diagnostic odyssey? Come join
- [Undiagnosed Day](https://udnf.org/undiagnosed-day/) - April 29, 2024 Post Event UpdateOn April 29th, 2024, the Wilhelm Foundation, the Undiagnosed Diseases Network Foundation (UDNF), and Undiagnosed Diseases Network International (UDNI), hosted the Undiagnosed Day 2024 Event at Harvard Medical School. Presentations from Global experts highlighted the great work being done across the globe toward improving the diagnostic odyssey for the undiagnosed
- [Together on Tuesdays:  IEPs and 504 Plans: A Education Primer](https://udnf.org/together-on-tuesdays-ieps-and-504-plans-a-education-primer/) - April 2, 2024 We know that all parents want their children to have access to an education. We invite you to be Together on Tuesday, April 2 at 12:00 p..m. ET for IEPs and 504 Plans: A Education Primer to get your questions answered so that you can be a better advocate for your child!Our
- [Planned Giving](https://udnf.org/planned-giving/) - Create a lasting legacy with your gift to the UDNF Let us help you tailor your charitable gift to your financial, tax or estate planning objectives. Bequest A charitable bequest is one of the easiest and most flexible ways that you can leave a gift to the UDNF that will make a lasting impact. Learn
- [Monthly Giving](https://udnf.org/monthly-giving/) - Our Monthly Giving Program Drives Us Towards Diagnosis, Research, Treatments and Support. The UDNF’s monthly giving program is supported by a dedicated group of donors who have made our mission a priority. They give what they can each month so that we can focus on improving access to diagnosis, research and care for everyone living
- [Together on Tuesdays: February 6th](https://udnf.org/udnf-live-online-event-on-february-6th/) - We’re excited to announce that we’ll be hosting a live online event on Tuesday, February 6th at 12:00 pm eastern for all patients and families living with undiagnosed or ultra-rare diseases. The focus of the meeting will be Patient Navigation at the UDNF: Meet the Navigators and Familiarize Yourself with our Resources.Throughout 2024, we’ll be
- [Together on Tuesdays: Introduction to the Patient Navigator Program](https://udnf.org/udnf-live-online-event-patient-navigation-at-the-udnf/) - February 6, 2023 We’re excited to announce that we’ll be hosting a live online event on Tuesday, February 6th at 12:00 pm eastern for all patients and families living with undiagnosed or ultra-rare diseases. The focus of the meeting will be Patient Navigation at the UDNF: Meet the Navigators and Familiarize Yourself with our Resources.Throughout
- [UDNF Live Online Event: UDNF: At the Intersection of Impossible Stories and Possible Solutions](https://udnf.org/udnf-live-online-event-december-6th-2/) - December 6, 2023 We’re excited to announce that we’ll be hosting a live online event on Wednesday, December 6th at 3 pm eastern for all patients and families living with undiagnosed or ultra-rare diseases. UDNF: At the Intersection of Impossible Stories and Possible SolutionsThis will be the first of many monthly events we will hold
- [Beneficiary Designation Gifts](https://udnf.org/beneficiary-designation-gifts/) - Beneficiary designated giving is a way to give to the UDNF by naming the UDFN as the beneficiary of your retirement account, such as an IRA, 401(k), or 403(b).
- [IRA Rollover](https://udnf.org/ira-rollover/) - An IRA charitable rollover is a way to transfer money from your IRA to the UDNF directly, without paying income tax on the distribution. This can be a great way to make a large gift to support our mission.
- [Endowment Gifts](https://udnf.org/endowment-gifts/) - An endowment is a fund you can create now or in the future to achieve a lasting impact. The income earned on your endowment will provide ongoing annual support to our mission.
- [Bequest Gifts](https://udnf.org/bequest-gifts/) - A bequest is a gift made through your will or trust. It is one of the easiest and most flexible ways to leave a lasting legacy to UDNF.
- [UDNF Live Online Event on December 6th](https://udnf.org/udnf-live-online-event-december-6th/) - We’re excited to announce that we’ll be hosting a live online event on Wednesday, December 6th at 3 pm eastern for all patients and families living with undiagnosed or ultra-rare diseases. UDNF: At the Intersection of Impossible Stories and Possible SolutionsThis will be the first of many monthly events we will hold on topics that
- [MyGene2](https://udnf.org/mygene2/) - By Dr. Chong and Dr. BamshadAfter you’ve been evaluated by the UDN and received a genetic diagnosis or a candidate gene has been found, what comes next? Or, if a genetic diagnosis couldn’t be made, what can you do to increase your chance of eventually finding a diagnosis? The answer is to share your data
- [Two Scoops of Chocolate and Salty Tears](https://udnf.org/two-scoops-of-chocolate-and-salty-tears/) - By Casey West Robertson | June 7, 2023As a parent and caregiver of an undiagnosed disease patient, we face many emotions and mental wellness challenges on our journey. Some of these emotions come in cycles when milestones are not met, and others come daily with the tasks of caring for an undiagnosed patient. We are consumed
- [Movement is Medicine](https://udnf.org/movement-is-medicine/) - By Andrea Klein | June 7, 2023As a mother of two children under the age of three, I think most would agree that life gets really busy. Add in an undiagnosed genetic condition shared by both children with a slew of medical complexities, most days feel like utter chaos. My journey began five years ago as
- [A Privileged Observer](https://udnf.org/a-privileged-observer/) - By Kathleen Cisco | June 7, 2023As clinical site coordinator for the UDN, I have a front row seat to the diagnostic odyssey. I am able to work directly and closely with the patients and families and come to know them intimately. By the time our families arrive at Washington University for an evaluation, they have
- [Caring for the Undiagnosed: A Provider's Perspective](https://udnf.org/caring-for-the-undiagnosed-a-providers-perspective/) - By F. Sessions Cole, M.D. | June 7, 2023 Caring for the Undiagnosed – those children and adults whose symptoms do not fit into a known diagnostic category – impacts every involved provider through many rewards, challenges, and guilt. Here, I offer my personal perspective about the impact of caring for the Undiagnosed on my
- [UDNF Promotes Access and Equity for Undiagnosed and Ultra-rare Disease Patients](https://udnf.org/udnf-promotes-access-and-equity-for-undiagnosed-and-ultra-rare-disease-patients-2/) - By Amy Gray | April 18, 2023 Washington, DC – Today, a team of patients with undiagnosed and ultra-rare diseases, their family members, medical providers, and advocacy partners announced the launch of the Undiagnosed Diseases Network Foundation (UDNF). The organization aims to improve access to diagnosis, research, and care for all with undiagnosed and ultra-rare diseases.
- [Patient Advocacy Organizations Partner to Host  Undiagnosed Day on April 29, 2023](https://udnf.org/udnf-promotes-access-and-equity-for-undiagnosed-and-ultra-rare-disease-patients/) - By Amy Gray | April 28, 2023Washington, DC – The Undiagnosed Diseases Network Foundation (UDNF) joins forces with patient advocacy organizations around the globe to shine a light on undiagnosed diseases. Undiagnosed Day seeks to educate policy makers, researchers, and health professionals about the need for improved access to diagnosis, research, and care for all
- [Tell Me More Lecture Series with the UDNF](https://udnf.org/tell-me-more-lecture-series-with-the-udnf/) - By Adaline Dunnberg | March 7, 2023 Today, our friends at UDN PEER hosted a lecture titled “UDNF: Centering Patients in Diagnosis, Research, and Care” featuring the organization’s founding board members. Watch the interview conducted by Sarah Marshall, UDN PEER Co-chair, to meet
- [DNA Deep Dive](https://udnf.org/dna-deep-dive/) - By Joy Cogan | January 18, 2023 Some people call my role a “genomicist”. I’m not the type of doctor you would ever meet at a clinic appointment (not an MD); I am a PhD researcher. My degree is in Biochemistry. I search through the very detailed code that makes you, well You. Why is it that the
- [Phoebe Marshall](https://udnf.org/phoebe-marshall/) - For a lot of my childhood, I was really hopeful that my doctors were going to figure out a diagnosis that would miraculously explain everything that was going on with me. I was young and didn’t understand much about the world around me but what I did know was that doctors were my version of
- [Congress Funds the UDN for $18M in 2023, but Advocacy Efforts Must Continue](https://udnf.org/congress-funds-the-udn-for-18m/) - By Adaline Dunnberg | December 22, 2022Thanks to the tireless efforts of patient advocates and legislators, funding for the Undiagnosed Diseases Network (UDN) will continue through 2023. On December 22, 2022, Congress passed a spending bill for 2023 that includes $18M to fund the UDN, including the coordinating center, all clinical sites, DNA sequencing core,
- [Global Genes and Rare-X](https://udnf.org/global-genes-rare-x/) - RARE Concierge, Global Genes’ patient services arm, is the first point of contact for many undiagnosed and newly diagnosed patients and families looking for answers, access to genetic counseling and testing, specialized care, clinical trials, resources, support, and connection. https://globalgenes.org/connect/rare-disease-patient-services/ Global Advocacy Alliance provides support to patient advocacy groups seeking guidance on building sustainable communities, fundraising,
- [Troy Evans](https://udnf.org/troy-evans/) - I am Troy Evans. An undiagnosed male from Utah. I consider myself a “neuromuscular disease fighter” and that word, “fight” crosses my mind many times per day. As I’ll explain later, this unknown enemy has wiped out most of my leg muscles. It’s also allowed me to explore adaptions for many of the activities I participate in.
- [Nikki Patrick](https://udnf.org/nikki-patrick/) - When my fourth child was born, a beautiful little girl named Felicity, I thought our family was complete. I had 4 beautiful children, a loving husband, and a happy successful life. I soon realized there was something amiss. My fairytale turned into every parent’s worst nightmare.Immediately after birth, I noticed differences with Felicity. She breathed
- [Michele Herndon](https://udnf.org/michele-herndon/) - From the age of 12, our son Mitchell lived each day knowing that an unknown disease was slowly robbing him of his hearing, leg movement and sensation, and his overall independence. He was receiving care from neurologists and specialists at one of the top pediatric hospitals and medical schools in the country and had visited
- [Ingrid Kovitch](https://udnf.org/ingrid-kovitch/) - Like so many in the Rare and Undiagnosed Disease community, my story begins with… surprise. For some it was an unexpected pregnancy complication. For others, a missed milestone, some insidious decline, or a dramatic medical crisis. And in the blink of an eye our hopes and dreams were abruptly shattered, only to be replaced by
- [Kelley Coleman](https://udnf.org/kelley-coleman/) - Finding Connection While UndiagnosedHaving an undiagnosed child with a disability leaves our family with many unanswered questions. What doctors specialize in our child’s care? How do we learn more about his condition? How do we map his future when there are no other maps for kids just like him? While I’m still working on these, one
- [Meghan Halley](https://udnf.org/meghan-halley/) - Posted originally on Once Upon a Gene. Written by Effie Parks.I met Meghan Halley on the NORD Living Rare Living Stronger planning committee. She co-chairs the patient and family support group for the Undiagnosed Diseases Network. She’s a Stanford research scholar and a mom to her undiagnosed son Philip. Can you share about yourself?I’m the mom of
- [Sarah Marshall](https://udnf.org/sarah-marshall/) - Phoebe, now nearly 13 years old, was first evaluated by the UDN in April 2017. It’s been four years and, like for so many others, information has been slow in coming. The timeline is blurred in my memory in a way that is likely familiar to many UDN participants: in person evaluation with blood drawn
- [Inside Look into the UDN University of Miami UDN Clinical Site](https://udnf.org/inside-look-university-of-miami/) - By Joanna Gonzalez | February 1, 2022 The University of Miami UDN clinical site is located in Miami Dade County, which is the seventh-largest county in the nation. It is one of the counties in the United States that is considered “minority-majority”, in that the population in our community is made up of 69.4 % Hispanic
- [Undiagnosed The Film](https://udnf.org/undiagnosed-the-film/) - By Katia Moritz | February 1, 2022Dr. Katia Moritz (left) sharing a joke with undiagnosed patient Jeremy Hobbs (right) during an interview for UNDIAGNOSEDHaving been a health care provider for decades, I thought I was prepared to navigate the health care system when I became sick, but I quickly realized that the system was not
- [What is Metabolomics and How Does it Help with Diagnosis in the UDN?](https://udnf.org/what-is-metabolomics/) - By Devin Oglesbee and Ian Lanza | February 1, 2022 Metabolomics refers to the study of the small molecules that are involved in many different metabolic pathways. An amino acid is an example of a metabolite, but there are thousands of unique metabolites in the human metabolome.
- [Inside Look into the UDN University of Utah Health Site: Interviews with Dr. Botto and Ashley Andrews](https://udnf.org/inside-look-university-of-utah/) - By Troy Evans | July 19, 2022Continuing UDN PEER’s efforts to highlight those individuals making the UDN special, I had the honor of meeting with those who operate the Utah UDN site in May, 2022.Dr. Lorenzo Botto (LB), MD, is the Principal Investigator of the Utah clinical site and professor of Pediatrics at the University of
- [Meeting Francis Collins](https://udnf.org/meeting-francis-collins/) - By Stephanie Tomlinson | October 5, 2022 During the last week of June, the UDN-PEER members had the incredible privilege of participating in the annual Steering Committee meeting. This opportunity allowed us to meet with all 12 UDN sites; and the "brains and hearts" that drive this network of curious researchers. I was one of the PEER members who shared our
- [Letter to UDN Families: Winter UDNF Organization Updates](https://udnf.org/letter-to-udn-families-winter/) - By Troy Evans | October 5, 2022 Autumn is already here (or finally here, I guess, if you’re one of those who prefers it above all other seasons) and work for UDN sustainability continues by so many wonderful people. Many things, including legislative advocacy efforts, have been wildly successful
- [Inside Look into the UDN Vanderbilt Site: Interviews with Dr. Phillips and Dr. Hamid](https://udnf.org/inside-look-into-the-udn-vanderbilt/) - By Ashley McMinn | October 5, 2022 Following the success of the Undiagnosed Diseases Network (UDN) at Vanderbilt University Medical Center (VUMC), the medical center is now establishing their own clinical program aimed at solving complex medical mysteries, the Vanderbilt
- [Getting a Genetic Diagnosis at the UDN](https://udnf.org/getting-a-genetic-diagnosis-at-the-udn/) - By Joy Cogan | October 5, 2022 Some people call my role a “genomicist”. I’m not the type of doctor you would ever meet at a clinic appointment (not an MD); I am a PhD researcher. My degree is in Biochemistry. I search through the very detailed code that makes you, well You. Why is it that the UDN needs someone like me at the Clinical Site to do this instead of simply
- [Rare and Undiagnosed Network (RUN)](https://udnf.org/rare-and-undiagnosed-network-run/) - Rare and Undiagnosed Network (RUN) is a group of advocates, patients, families, researchers, and healthcare providers who share a same mission and vision as PEER: to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.https://rareundiagnosed.org/
- [National Organization for Rare Disorders](https://udnf.org/national-organization-for-rare-disorders/) - NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.https://rarediseases.org/
- [EveryLife Foundation for Rare Diseases](https://udnf.org/everylife-foundation-for-rare-diseases/) - The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources and opportunities to make patient voices heard. By activating the patient
- [Global Healthy Living Foundation (GHLF)](https://udnf.org/global-healthy-living-foundation-ghlf/) - The coronavirus (COVID-19) pandemic is an unprecedented public health crisis, and especially stressful for people who are living with chronic health conditions. The Global Healthy Living Foundation (GHLF) is committed to being a reliable source of information, community, and support for patients and their families around the world.The GHLF offers a patient support program for
- [Genetic and Rare Diseases Information Center (GARD)](https://udnf.org/genetic-and-rare-diseases-information-center-gard/) - GARD provides multiple resources for individuals with rare diseases. There is a searchable database that will give easy to understand information on more than 6,500 conditions. If you can’t find the information you need within the database, you can contact one of GARD’s information specialists. These specialists can help answer questions, connect you with support
- [Questions to Ask your Providers](https://udnf.org/questions-to-ask-your-providers/) - UDN PEER created a document entitled “Questions to Ask” that aims to help individuals formulate the next steps of their undiagnosed journey and communicate with their healthcare team. We have different sections based on whether a genetic diagnosis was/was not given.Some example questions are:Will they continue to reanalyze/re-review your data? Some programs have the funding
- [Christin Siscoe](https://udnf.org/christin-siscoe/) - Aldis Hodge was recently quoted as saying, “What makes a superhero? They’re supposed to represent hope, opportunity, and strength for everybody.” As a mom, I find this statement a true reflection on my Cooper and every UDN participant. Our journey began shortly after Cooper was born. Cooper was a miracle baby in the beginning. After

## Pages

- [Home Page](https://udnf.org/) - Making Diagnosis, Research & Treatments Possible for All A world where no family with an undiagnosed or ultra-rare condition has to fight alone for a diagnosis, research, treatment or support. Support Us Today! What is an undiagnosed disease? How can I get support? How can I get a diagnosis? The Latest News from the UDNF
- [The Undiagnosed Exchange](https://udnf.org/the-undiagnosed-exchange/) - About The Undiagnosed ExchangeThe Undiagnosed Exchange is a virtual, facilitated, small group intended to provide support and education for persons or caregivers going through a diagnostic odyssey. There is no fee associated with participating in this group. The facilitators have both been through a diagnostic odyssey and they will lead the group in discussions and
- [About UDNF](https://udnf.org/about-udnf/) - 10000+ identified rare diseases 85%of rare diseases affect less than one in a million UDN Impact 3834participants evaluated at UDN 1054patients diagnosed through the UDN 2594Participants have had exome and/or genome sequencing 97new conditions discovered at UDN OverviewThe Undiagnosed Diseases Network Foundation (UDNF) is a patient-driven nonprofit fostering community, support, innovation, and action for families
- [Undiagnosed Community](https://udnf.org/undiagnosed-community/) - We are realizing a world where no family with a rare or undiagnosed condition has to fight alone for a diagnosis, research, treatment or support If you’re here, you belong! Come together with other patients and caregivers to share experiences and knowledge, work with providers to improve the undiagnosed journey, take action and drive innovation.
- [Community Councils](https://udnf.org/about-udnf/community-councils/) - Community Councils are groups of volunteers making an impact across the UDNF mission – support, engagement, action, fundraising, and innovation. All are welcome to join these councils to add their time, insights, and talents to the UDNF mission. Through the Community Councils, the UDNF will ensure that the organization’s priorities are directly reflective of changing
- [Undiagnosed Resource Guide](https://udnf.org/undiagnosed-resource-guide/) - Here are some resources we thought you might find helpful. Access UDNF Resources and CommunityLooking to find social groups to connect with those living undiagnosed?Submit a patient navigation support requestJoin with other rare and undiagnosed families on UDNF’s Facebook Group.Find other families who are part of the Undiagnosed Diseases Network’s Facebook Group (this group is specifically for
- [Patient Navigation Program](https://udnf.org/patient-navigation-program/) - We’re here to help! If you or a loved one are experiencing the uncertainty of an undiagnosed condition, we are so glad you found us. Our Undiagnosed Resource Guide contains helpful tools on your search for answers. In the meantime, need support? Talk to one of Navigators. They are here to listen and provide the
- [Staff](https://udnf.org/about-udnf/our-team/) - UDNF Team Danielle Carnival, Ph.D. | she/herChief Executive OfficerDanielle Carnival, Ph.D. is a national leader in health, research, and policy. She led the White House Cancer Moonshot from 2021- 2025 which delivered more than 125 federal actions and steps from more than 250 private sector organizations to improve the experience and outcomes for people facing
- [Join Us](https://udnf.org/join-us/) - If you’re here, you belong!We understand the undiagnosed journey can be isolating and overwhelming.At the UDNF, belonging doesn’t require a diagnosis. Whether you’re newly searching for answers, have been undiagnosed for years, or share the experience of being undiagnosed as a family member or caregiver, there’s a place for you here.CommunityCome together with other patients
- [Board of Directors](https://udnf.org/about-udnf/board-of-directors/) - Board of DirectorsThe UDNF is led by and for patients and families. As such, a majority of our board members must be individuals with undiagnosed or rare diseases or their immediate family members. F. Sessions Cole, Board Chair | he/himProfessor of Pediatrics, Washington University School of Medicine Dr. Cole is a neonatologist who began studying
- [Support](https://udnf.org/support/) - We’re here to help! If you or a loved one are experiencing the uncertainty of an undiagnosed condition, we are so glad you found us. Check out our Undiagnosed Resource Guide to gain knowledge and helpful tools on your search for answers. Need additional support, talk to one of Navigators. They are here to listen
- [Undiagnosed Diseases Network (UDN)](https://udnf.org/undiagnosed-diseases-network-udn/) - The UDN is a research study focused on diagnosis for complex cases. Learn more below to see if the UDN might be the right study for you. Visit the UDN Research Study for Undiagnosed Diseases: About the Undiagnosed Diseases Network (UDN) If you or your loved one has ongoing symptoms and no diagnosis despite seeking specialists
- [How can I get a diagnosis?](https://udnf.org/how-can-i-get-a-diagnosis/) - The UDNF works closely with the Undiagnosed Diseases Network (UDN), a research study funded by the National Institutes of Health (NIH) that brings together clinical and research experts from across the United States to evaluate undiagnosed patients. Learn more about the UDN and if you should submit your case here. If you are looking for
- [How to Submit a Case](https://udnf.org/how-to-submit-a-case/) - Research Study for Undiagnosed Diseases: How to Submit Your CaseThe researchers at the UDN review every submitted case. If you have ongoing symptoms, no clear diagnosis, and are unsure where to go for an undiagnosed illness, the UDN may be able to help. How to Submit Your Case What Happens Next? Every submitted case receives a
- [PEER Team](https://udnf.org/about-udnf/udnfpeer/) - PEER is the UDNF’s patient advisory council, ensuring that the organization is deeply connected to and fueled by the undiagnosed patient and family community. UDNF PEER members are active in publication of the UDNF PEER newsletter, sponsor the Tell Me More Lecture Series, bring the community together through events, inform research through the UDN, and
- [Research and Innovation](https://udnf.org/research-and-innovation/) - We believe that everyone deserves access to patient-centered research that will lead to a diagnosis and treatment for their condition, regardless of their financial status or where they live. The Challenges of Rare Research The rarity and complexity of rare, ultra-rare, and undiagnosed conditions create an incredible challenge for the healthcare system and medical research. Patients often
- [What is an Undiagnosed Disease](https://udnf.org/what-is-an-undiagnosed-disease/) - What is an undiagnosed disease? An undiagnosed disease is a medical condition without a known cause, even after many tests and visits to different specialists. Approximately 30 million people in the United States live with a rare disease. A portion of those people live with an undiagnosed condition. Researchers estimate about 80% of undiagnosed diseases have
- [Financial Transparency](https://udnf.org/financial-transparency/) - At the UDNF, we are committed to transparency and accountability. We strive to ensure every donation is used effectively to advance diagnosis, research, and treatment for undiagnosed and ultra-rare diseases. Below, you will find key financial documents that reflect our dedication to ethical stewardship and impactful work. 2024 Annual Report Our 2024 Annual Report highlights
- [UDN FAQs](https://udnf.org/udn-faqs/) - How does the UDN make sure their research is fair, safe, and ethical?The UDN follows rules and laws to keep people safe when they do research. A special group, called the Institutional Review Board, reviews the UDN’s research to make sure it protects the rights and safety of the people who participate. The UDN protects
- [Givebutter Instructions](https://udnf.org/givebutter-instructions/) - UDNF’s Fundraising Platform – Givebutter Below are two guides on how to manage your fundraising campaign and join a team that has already been formed. How to Join a Team in Givebutter How to Manage Your Team Member Page In Givebutter
- [Webinar Recordings](https://udnf.org/webinar-recordings/) - UDNF Webinars 9 Videos Advancing Hope and Breakthroughs in Undiagnosed and Ultra-Rare Diseases​ 1:39:23 Growing up Together: Recognizing and Supporting Siblings of the Undiagnosed & Ultra-rare 57:01 Together on Tuesday What is Palliative Care Really? 56:43 Book Launch – Everything No One Tells You About Parenting a Disabled Child Why is Obtaining a Diagnose Challenging?
- [E-News Sign Up](https://udnf.org/about-udnf/e-news-sign-up/) - Sign up for UDNF E-News * indicates required Email Address *First Name Last Name Address Address Line 2CityState/Province/RegionPostal / Zip CodeCountryAlbaniaAlgeriaAndorraAngolaArgentinaArmeniaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBosnia and HerzegovinaBotswanaBrazilBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaColombiaCongoCroatiaCyprusCzech RepublicDenmarkDjiboutiEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFijiFinlandFranceGabonGambiaGeorgiaGermanyGhanaGreeceGuamGuineaGuinea-BissauGuyanaHondurasHong KongHungaryIcelandIndiaIndonesiaIrelandIsraelItalyJapanJordanKazakhstanKenyaKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLiechtensteinLithuaniaLuxembourgMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMauritaniaMexicoMoldovaMonacoMongoliaMoroccoMozambiqueNamibiaNepalNetherlandsNetherlands AntillesNew ZealandNicaraguaNigerNigeriaNorwayOmanPakistanPanamaParaguayPeruPhilippinesPolandPortugalQatarReunionRomaniaRussiaRwandaSamoa (Independent)Saudi ArabiaSenegalSeychellesSierra LeoneSingaporeSlovakiaSloveniaSomaliaSouth AfricaSouth KoreaSpainSri LankaSurinameSwazilandSwedenSwitzerlandTaiwanTanzaniaThailandTogoTunisiaTurkiyeTurkmenistanUgandaUkraineUnited Arab EmiratesUruguayUSAUzbekistanVatican City State (Holy See)VenezuelaVietnamVirgin Islands (British)YemenZambiaZimbabweAntigua And BarbudaAnguillaAmerican SamoaArubaBrunei DarussalamBouvet
- [Events](https://udnf.org/events-2/) - Registration is Open – Undiagnosed Exchange July 22, 2026 About The Undiagnosed Exchange The Undiagnosed Exchange is a virtual, facilitated, small group intended to provide support and education for persons or caregivers going through a diagnostic odyssey. There is no fee associated with participating in this group. The facilitators have both Read More » Community
- [Therapeutic Matching and Discovery Initiative](https://udnf.org/therapeutic-matching/) - Therapeutic Matching and Discovery Initiative We believe that everyone deserves access to the best possible care and treatments, regardless of their financial status or where they live. The need for therapies is urgent. More than 95% of the ~10,000 known rare diseases do not have an FDA-approved therapy. Rare diseases affect ~30,000,000 individuals in the
- [Patient-Centered Research Initiative](https://udnf.org/patient-centered-research-initiative/) - Patient-Centered Research InitiativeWe believe that everyone deserves access to patient-centered research that will lead to a diagnosis and treatment for their condition, regardless of their financial status or where they live.The Challenges of ResearchThe rarity and complexity of undiagnosed and ultra-rare conditions create an incredible challenge for medical professionals and researchers. Patients often experience a
- [Undiagnosed & Ultra-rare Diseases Diagnostic Program](https://udnf.org/undiagnosed-ultra-rare-diseases-diagnostic-program/) - Undiagnosed & Ultra-rare Diseases Diagnostic ProgramWe believe that everyone deserves a diagnosis, regardless of their financial status or where they live.The Challenges of DiagnosisUndiagnosed and ultra-rare disease patients desperately need diagnostic programs tailored to their specific circumstances. One in ten people have a rare disease. Considering that 30 million individuals live with a rare disease
- [Events](https://udnf.org/events/) - Registration is Open – Undiagnosed Exchange July 22, 2026 About The Undiagnosed Exchange The Undiagnosed Exchange is a virtual, facilitated, small group intended to provide support and education for persons or caregivers going through a diagnostic odyssey. There is no fee associated with participating in this group. The facilitators have both Read More » Community
- [News and Events](https://udnf.org/latest-news/) - Press Releases Meet Our New CEO Read More » Statement on Rare Disease Day, Research and Funding Read More » Undiagnosed Diseases Network Foundation (UDNF) Launches Patient Navigation Program Read More » UDN PEER and UDNF Integrate Efforts to Strengthen Voice of UDN Participants Read More » Undiagnosed Diseases Network Foundation Strategic Plan 2023-2025 Read
- [PEER Quarterly Newsletter](https://udnf.org/peer-quarterly-newsletter/) - UDNF October 2024 E-News Read the October E-News Highlights Undiagnosed. UIltra-rare. United. UDNF Community Events Heartfelt letters written by current and past UDNF PEER members Read More » UDNF PEER Newsletter – June 2024 Read the June E-News A Note from the Editor In our June Newsletter we are excited to highlight the UDN Site
- [UDNF E-News](https://udnf.org/udnf-e-news/) - UDNF December 2024 E-News Read the December E-News Highlights Advancing Hope: A Year of Research Progress in Undiagnosed and Ultra-rare Diseases Until Rare is Not a Barrier: How Your Donation Helps Help Make the Impossible Possible Read More » UDNF November 2024 E-News Read the November E-News Highlights Undiagnosed. Ultra-rare. United. UDNF Community Events 2024
- [Press Room](https://udnf.org/press-room/) - Meet Our New CEO We’re excited to welcome Danielle Carnival, Ph.D., as our new CEO of the UDNF! She brings not only deep expertise in science and policy, but a heartfelt commitment to listening, learning, and working with the rare and undiagnosed communities. Read More » Statement on Rare Disease Day, Research and Funding UDNF
- [Patient Stories](https://udnf.org/patient-stories/) - Jessica Eddings 2025 was a big year for our family. For the previous 5 years, we were navigating an undiagnosed journey with our youngest child, Isla. Isla received many diagnoses in her first 2 months of life: microcephaly, hypotonia, global developmental delay, cortical visual impairment, all pointing Read More » Danny Miller Our first son
- [What are Ultra-Rare Diseases](https://udnf.org/what-are-ultra-rare-diseases/) - What are ultra-rare diseases?An Ultra-rare disease is a condition that affects fewer than 1 in 50,000 people. This means that in the U.S., for any ultra-rare disease, less than 7000 people live with that condition. Some of these diseases are so rare that only a few people in the world have it.Causes of ultra-rare diseaseGenetic factors
- [PEER](https://udnf.org/about-udnf/peer/) - PEER – Coming Soon!
- [Contact Us](https://udnf.org/about-udnf/contact/) - Items marked with * are required. Name Email Phone Preferred Contact Method Subject Message Send 1012 14th St NWSuite 500Washington, DC 20005202-599-4465info@udnf.org
- [Español](https://udnf.org/espanol/) - Descripción General La UDNF (Fundación de la Red de Trabajo de Enfermedades No Diagnosticadas) tiene como objetivo fomentar la colaboración entre pacientes, médicos y científicos para mejorar la calidad de vida de pacientes con enfermedades ultra raras y con enfermedades no diagnosticadas. Hacemos esto mitigando las barreras a la equidad y el acceso a la
- [Community Outreach and Education](https://udnf.org/community-outreach-and-education/) - The UDNF’s community outreach and education program aims to optimize the use of knowledge and evidence for decision-making by delivering findings back to the front line in a form that can be acted upon. We do this by establishing and disseminating clinical and research protocols for serving undiagnosed patients, centralizing communication for undiagnosed service providers,
- [Donate](https://udnf.org/home/donate/)
- [Connect with the UDNF](https://udnf.org/connect-with-the-udnf/)
- [No Access](https://udnf.org/no-access/)
- [Coming Soon](https://udnf.org/coming-soon/) - Coming Soon
- [Cookie Settings](https://udnf.org/cookie-settings/) - Cookies are small pieces of data that are stored on your device when you visit a website. They are used to remember your preferences, improve the user experience, and track website usage. Our website uses cookies to provide you with a better experience and to understand how our website is being used. Cookie Types We
- [Privacy Policy & Terms of Use](https://udnf.org/privacy-policy/) - This privacy policy outlines how we handle personal information on our website. By using our website, you consent to the collection, use, and disclosure of your personal information in accordance with this policy. Collection of Information We collect personal information from visitors to our website when they voluntarily provide it, such as when they make

## Downloads

- [Genetic Testing Lab Comparison Guide](https://udnf.org/download/4625/?tmstv=1786878434)
- [UDNF Guide to Genetic Testing](https://udnf.org/download/4622/?tmstv=1786878434)
- [Undiagnosed Day Agenda](https://udnf.org/download/4595/?tmstv=1786878434)
- [My Medical History Toolkit](https://udnf.org/download/4502/?tmstv=1786878434)
- [2024 UDNF 990 Form](https://udnf.org/download/4167/?tmstv=1786878434)
- [2023 UDNF 990 Form](https://udnf.org/download/4164/?tmstv=1786878434)
- [Expand Our Roots Toolkit](https://udnf.org/download/4053/?tmstv=1786878434)
- [9 Signs of a Rare Disease](https://udnf.org/download/2560/?tmstv=1786878434)
- [I am a Branch Leader Graphic #1](https://udnf.org/download/3999/?tmstv=1786878434)
- [I'm Halfway To My Goal](https://udnf.org/download/4043/?tmstv=1786878434)
- [I am a Branch Leader Graphic #2](https://udnf.org/download/4001/?tmstv=1786878434)
- [Support the UDNF](https://udnf.org/download/3997/?tmstv=1786878434)
- [About the UDNF](https://udnf.org/download/3994/?tmstv=1786878434)
- [I've Met My Goal](https://udnf.org/download/4047/?tmstv=1786878434)
- [UDNF's Indigo The Bunting Terms of Use](https://udnf.org/download/4038/?tmstv=1786878434)
- [UDNF's Expand Our Roots Campaign Toolkit Terms of Use](https://udnf.org/download/4032/?tmstv=1786878434)
- [How to Join a Team in Givebutter](https://udnf.org/download/3956/?tmstv=1786878434)
- [How to Manage Your Team Member Page in Givebutter](https://udnf.org/download/3959/?tmstv=1786878434)
- [UDNF Story Prompts for Branch Leaders](https://udnf.org/download/3968/?tmstv=1786878434)
- [UDNF Fundraising Tips](https://udnf.org/download/3962/?tmstv=1786878434)
- [UDNF Talking Points](https://udnf.org/download/3965/?tmstv=1786878434)
- [2024 Annual Report](https://udnf.org/download/3810/?tmstv=1786878434)
- [2023 Annual Report](https://udnf.org/download/3578/?tmstv=1786878434)
- [2025 Summit: Ending the Diagnostic Odyssey](https://udnf.org/download/2794/?tmstv=1786878434)
- [UDNF Strategic Plan 2023-2025](https://udnf.org/download/1841/?tmstv=1786878434)

## Categories

- [Uncategorized](https://udnf.org/category/uncategorized/)
- [Stories](https://udnf.org/category/stories/)
- [News](https://udnf.org/category/news/)
- [Resources](https://udnf.org/category/resources/)
- [Events](https://udnf.org/category/events/)
- [Community Education](https://udnf.org/category/resources/community-education/)
- [Diagnosis](https://udnf.org/category/resources/diagnosis/)
- [Mental Health & Support](https://udnf.org/category/resources/mental-health-support/)
- [Ways to Give](https://udnf.org/category/ways-to-give/)
- [Planned Giving](https://udnf.org/category/planned-giving/)
- [Press Release](https://udnf.org/category/press-release/)
- [PEER Quarterly Newsletter](https://udnf.org/category/peer-quarterly/)
- [UDNF E-News](https://udnf.org/category/e-news/)