Latest News

UDNF March 2024 E-News

Read the March E-News Highlights Navigating Ultra-rare Diseases and How the UDNF Helps February Together on Tuesdays Wrap-up: What is a Patient Navigator? Upcoming Events

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UDNF November 2023 E-News

Read the November E-News Highlights UDNF Live Online Event Update on Patient Navigation Program Sign Up for E-News Giving Tuesday is Coming Up Soon! Let’s Make the Impossible Possible

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Undiagnosed Day

April 29, 2024 The Undiagnosed Day, hosted by the Wilhelm Foundation, the Undiagnosed Diseases Network Foundation (UDNF), and Undiagnosed Diseases Network International (UDNI), will include presentations from Global experts highlighting the great work which is being done across the globe focusing on improving the diagnostic

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Together on Tuesdays: 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

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UDNF Live Online Event on 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 Solutions This will be the

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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

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Urgent Action Needed: Support Funding for the UDN

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

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Two Scoops of Chocolate and Salty Tears

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

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Movement is Medicine

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

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A Privileged Observer

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

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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

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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

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Letter to UDN Families: Winter UDNF Organization Updates

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

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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

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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

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Undiagnosed The Film

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.

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Introducing 2022 UDN PEER

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

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