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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

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

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

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 Solutions This will be the

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

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

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

By Adaline Dunnberg | June 19, 2023 Your 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

By Casey West Robertson | June 7, 2023 As 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

By Andrea Klein | June 7, 2023 As 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

By Kathleen Cisco | June 7, 2023 As 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

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

By Amy Gray | April 28, 2023 Washington, 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

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.

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

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

By Adaline Dunnberg | December 22, 2022 Thanks 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

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

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

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

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

By Troy Evans | July 19, 2022 Continuing 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

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

By Katia Moritz | February 1, 2022 Having 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 prepared for undiagnosed patients like me.

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.

By Sarah Marshall | February 1, 2022 As I write, sitting on the sofa in my living room, the image of being in a snow globe springs to my mind. Within my snow globe is a centerpiece that sits perfectly still, unflustered by the snowstorm

By Jennifer L. Young, PhD, AMFT | October 1, 2019 Sibling relationships are often the longest, closest relationships we have in our lives. All parents hope that their children will get along and become best friends, but this isn’t always the case. And in families with a child that has a rare or