Press Room

UDNF Statement on Rare Disease Day 2025 Cancellation, Research Funding, and Policy Impacts on the Ultra-Rare and Undiagnosed Community

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

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

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 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