Undiagnosed Diseases Network Foundation (UDNF)

CALL TO ACTION Your voice is needed to urge the NIH to distribute Undiagnosed Diseases Network (UDN) funding by April 1, 2025. A call to YOUR representatives about this time-sensitive issue regarding NIH funding of the UDN can make a difference! Use the link or the QR Code to find your representatives and CALL! https://lnkd.in/grup5-2 It is important to share the importance of the UDN and the urgency of the request for the release of funds — but we ask that your tone and delivery be polite and non-aggressive when you speak to the offices. Please Note for UDN Participants -UDN clinical sites are funded through the summer, so we don’t expect appointments to be canceled. What will be affected without this funding: -Essential tools for finding diagnoses, such as sequencing, model organisms, and central analysis -Network coordination and data sharing We are working hard to access the necessary funding to continue supporting critical UDN evaluations, but we need your help! The specific ask when you call: We understand that the NIH Grants Management team and Budget Offices have been working diligently with limited resources to move forward with distributing funds required for the UDN to continue its operations after April 1, 2025. However, like many other NIH-funded clinical trials, the UDN’s care and research on behalf of more than 2,000 undiagnosed UDN participants will be profoundly interrupted on April 1, 2025, without the distribution of these funds. Please ask the NIH and HHS to consider urgently prioritizing approval for distribution of UDN funding. Example Talking Points: -Hello, my name is… -I live at 1234 Bend Street, Your Town, Zip Code -I am calling to ask <insert Rep name here> to urge the NIH and HHS to urgently prioritize approval for distribution of Undiagnosed Diseases Network funding. -These funds are critical for research and clinical testing for existing patients. -Access to this testing will pause if the funding is not released by April 1 and this will affect me/my family member/loved one. -I/My family member/loved one was/is a participant in the Undiagnosed Diseases Network, a research study funded through the NIH. [Give short personal story here] -If the staffer has additional questions, they can connect with UDNF staff at [email protected] You may speak to a staffer or leave a message. If you have a notable conversation or story to share about your interaction with the staffer, please contact us also at [email protected]

St. Patrick’s Day & Rare Disease: Is It Luck or Innovation? In the world of undiagnosed diseases, patients and families often hear phrases like “you’re lucky we caught this” or?“it was just by chance that we found an answer.” But in reality, diagnostic progress isn’t luck—it’s research, collaboration,?and perseverance. The Undiagnosed Diseases Network (UDN) is transforming the diagnostic landscape by leveraging cutting-edge genomics,?AI-driven analysis, and multi-disciplinary expertise to uncover answers that once seemed impossible. At UDNF, we advocate for a future where no one has to rely on "luck" to receive a diagnosis. Instead, we push for better funding,?more research, and stronger support networks to accelerate discoveries.

?????????????????? ?????? ???????????? ???? ??????????????????: ?????? ??????’?? ???????????????????????????? ???????????? The diagnostic process for rare and undiagnosed diseases has long been a road full of dead ends—until the Undiagnosed Diseases Network (UDN) set a new precedent. By integrating cutting-edge genomics,?multidisciplinary collaboration, and innovative research, the UDN is redefining what’s possible in modern medicine. For patients and families who have spent years—sometimes decades—searching for clarity, the UDN is not just a network; it’s hope. With each new discovery, we move closer to a world where no one is left undiagnosed. At UDNF, we are proud to support this life-changing work, advocating for greater access, research, and?support for those on their diagnostic journey. Because every patient deserves a name for their condition—and a pathway to care. #UDNF #Hope4Diagnosis

Rally for Rare: Community & Commitment When the NIH and FDA announced the cancellation of their Rare Disease Day activities, Worldwide Clinical Trials refused to let the moment pass. In less than a week, they pulled together an incredible alternate event—securing a location, planning meals, organizing A/V, setting up information tables, and curating a packed agenda of meaningful presentations. Michele Herndon, UDNF’s Interim Director, had the honor of kicking off the day, sharing her perspective as the mother of an undiagnosed and later ultra-rare patient. Her presentation focused on her journey with Mitchell Syndrome, the fight to continue funding for the UDN in 2022, the formation of the UDNF in 2023, and the launch of the Patient Navigator Program in 2024. The room was filled with determination—determination for continued research, treatments, and awareness for rare and undiagnosed patients. Events like these remind us that when institutions step back, the rare disease community steps up. Thank you to Worldwide Clinical Trials and everyone who made this event possible. The fight for answers and breakthroughs continues! #RallyForRare #RareDiseaseDay #RareDC2025 #UDNF

Exciting Announcement from UDNF: Rally for Rare 2025 is Happening!? We are thrilled to share that Rally for Rare is officially moving forward thanks to Worldwide Clinical Trials!? ?? Date: Friday, February 28, 2025 ? Time: Doors open at 8 AM | Event begins at 9 AM ?? Location: Hyatt Regency Bethesda ?? One Bethesda Metro Center, 7400 Wisconsin Ave, Bethesda, MD 20814 ?Register now: https://ow.ly/MngH50V5Olt This event is designed to complement and support the important work of the NIH and FDA conferences while providing an additional space for the rare disease community to learn, share, and connect. The UDNF Interim Director, Michele Herndon, will speak on the work of the UDNF. This event is for you—the rare disease community. Whether you're attending as a patient, caregiver, researcher, advocate, or industry professional, your participation matters. #UDNF #RallyforRare #CommunityDriven #ResearchMatters

Advocacy in Action: Rare Disease Week 2025 This week, our Interim Director, Michele, took advocacy to the skies—literally! While en route to Washington, D.C., for Rare Disease Week, she had the unexpected opportunity to speak with Rep. Ann Wagner (MO-2) and Rep. Bob Onder (MO-3) about the urgent concerns surrounding the unexpected suspension of funding for research and academic institutions. Both Representatives listened intently, offered valuable insights, and even provided follow-up contacts to keep the conversation going—showing that every moment can be an opportunity to make an impact. Michele’s challenge to all of us: “If you have an opportunity, seize it.” Even if you're nervous or unprepared, believe in yourself and remember—every conversation can spark change. Let this be a reminder that advocacy happens everywhere, not just in planned meetings. Your voice matters. Your story matters. And together, we can drive change for the rare and undiagnosed community. #UDNF #RareDC2025

Advocacy in Action: Rare Disease Week 2025 This week, our Interim Director, Michele, took advocacy to the skies—literally! While en route to Washington, D.C., for Rare Disease Week, she had the unexpected opportunity to speak with Rep. Ann Wagner (MO-2) and Rep. Bob Onder (MO-3) about the urgent concerns surrounding the unexpected suspension of funding for research and academic institutions. Both Representatives listened intently, offered valuable insights, and even provided follow-up contacts to keep the conversation going—showing that every moment can be an opportunity to make an impact. Michele’s challenge to all of us: “If you have an opportunity, seize it.” Even if you're nervous or unprepared, believe in yourself and remember—every conversation can spark change. Let this be a reminder that advocacy happens everywhere, not just in planned meetings. Your voice matters. Your story matters. And together, we can drive change for the rare and undiagnosed community. #UDNF #RareDC2025

Urgent Ask towards Federal Funding! Calling all members of the Undiagnosed Diseases Network Foundation (UDNF) community—patients, caregivers, clinicians, researchers, and advocates! In honor of Rare Disease Week 2025, we encourage you to sign a petition urging Congress to sustain federal leadership, prioritize biomedical research funding, and enhance public health resources for those impacted by rare and undiagnosed conditions. We are proud to support the efforts of the @EveryLife Foundation for Rare Diseases, which is leading this initiative to ensure our voices are heard. The goal is 10,000 signatures by Thursday February 27 at 5 p.m. How to Take Action ? Add your name by signing the petition here: https://lnkd.in/eJgQQtyT ? Sign before Thursday at 5 PM ET to ensure your support is counted. Your first and last name will appear on the letter sent to Congress, but public versions will only display the total number of signatories—not individual names. Help Spread the Word! Encourage your family, friends, and community members to sign and amplify our collective impact. This petition is for individual signers, so please share widely to ensure the power of our community is fully represented. Thank you for standing with us and strengthening the voice of those navigating rare and undiagnosed diseases! Among us are many diseases rare, ultra-rare and undiagnosed but together we are one!

The Undiagnosed Diseases Network Foundation (UDNF) recognizes the disappointment that comes with the postponement of the FDA-NIH Rare Disease Day 2025 event. For many in the undiagnosed and ultra-rare disease community, these moments of visibility and advocacy are essential in driving research, policy change, and connection. Our team remains optimistic about the rare disease community’s ability to make a meaningful impact on Capitol Hill next week alongside our partners at the EveryLife Foundation for Rare Diseases. While this change may shift plans, it does not shift our mission. UDNF remains committed to advancing diagnosis, research, and treatment for all individuals navigating the unknowns of ultra-rare and undiagnosed conditions. Through our Patient Navigation Program, research collaborations, and patient-driven initiatives, we are ensuring that progress continues—no matter the obstacles. At the same time, advocacy remains a part of our work. Members of the UDNF team are in Washington, D.C. this week, meeting with legislators to ensure that ultra-rare and undiagnosed patients are not left behind. We are committed to securing continued research funding and policy advancements that improve access to diagnosis, care, and treatment. The power of this community has always been its resilience. Even in uncertainty, we find ways to amplify voices, share knowledge, and push forward. We encourage patients, caregivers, and advocates to stay engaged, raise awareness, and continue to build momentum in their own ways. UDNF will always stand beside you—championing the search for answers and patient advocacy. Read full statement here: https://lnkd.in/ek__35YX

The Undiagnosed Diseases Network Foundation (UDNF) recognizes the disappointment that comes with the postponement of the FDA-NIH Rare Disease Day 2025 event. For many in the undiagnosed and ultra-rare disease community, these moments of visibility and advocacy are essential in driving research, policy change, and connection. Our team remains optimistic about the rare disease community’s ability to make a meaningful impact on Capitol Hill next week alongside our partners at the EveryLife Foundation for Rare Diseases. While this change may shift plans, it does not shift our mission. UDNF remains committed to advancing diagnosis, research, and treatment for all individuals navigating the unknowns of ultra-rare and undiagnosed conditions. Through our Patient Navigation Program, research collaborations, and patient-driven initiatives, we are ensuring that progress continues—no matter the obstacles. At the same time, advocacy remains a part of our work. Members of the UDNF team are in Washington, D.C. this week, meeting with legislators to ensure that ultra-rare and undiagnosed patients are not left behind. We are committed to securing continued research funding and policy advancements that improve access to diagnosis, care, and treatment. The power of this community has always been its resilience. Even in uncertainty, we find ways to amplify voices, share knowledge, and push forward. We encourage patients, caregivers, and advocates to stay engaged, raise awareness, and continue to build momentum in their own ways. UDNF will always stand beside you—championing the search for answers and patient advocacy. Read full statement here: https://lnkd.in/ek__35YX