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 feel...
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 time our...
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...
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...
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,...
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...
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,...
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,...
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...