October 26, 2024 Strengthening existing relationships and creating new connections in the undiagnosed and ultra-rare community, our in-person events aim to foster meaningful relationships where patients and families feel they belong. If you are a patient, family or community member that lives with or supports someone
October 5, 2024 Strengthening existing relationships and creating new connections in the undiagnosed and ultra-rare community, our in-person events aim to foster meaningful relationships where patients and families feel they belong. If you are a patient, family or community member that lives with or supports someone
A first-of-its kind collaborative event for Undiagnosed, Ultra-Rare & Rare disease industry, clinical and community leaders. The diagnostic odyssey for rare diseases is a significant challenge, often leaving patients and families lost in a maze of tests, misdiagnoses, missed opportunities to participate in clinical trials,
March 22, 2024 We invite you to our next UDNF Lecture Series on Friday, March 22nd at 12:00 p..m. ET for Meeting Unmet Needs: UDN Peer Meets the UDNF. Our goal is to make these sessions informative and interactive, to give you a chance to
August 22, 2024 We invite you to our book launch of Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports on Thursday, August 22nd at 12:00 p..m. ET. Everything No One Tells You About Parenting a Disabled Child:
September 3, 2024 We invite you to our next UDNF Together on Tuesdays series on Tuesday, September 3rd at 12:00 p..m. ET for What is Palliative Care, REALLY? What is Palliative Care REALLY? What is palliative care, REALLY? Hospice care? Concurrent care? Too often, these
July 11, 2024 We invite you to our next UDNF Tell Me More Lecture Series on Thursday, July 11th at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. Are you an undiagnosed patient
April 29, 2024 Post Event Update On April 29th, 2024, the Wilhelm Foundation, the Undiagnosed Diseases Network Foundation (UDNF), and Undiagnosed Diseases Network International (UDNI), hosted the Undiagnosed Day 2024 Event at Harvard Medical School. Presentations from Global experts highlighted the great work being done
April 2, 2024 We know that all parents want their children to have access to an education. We invite you to be Together on Tuesday, April 2 at 12:00 p..m. ET for IEPs and 504 Plans: A Education Primer to get your questions answered so
February 6, 2023 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
December 6, 2023 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