Multidisciplinary expert panel explores the necessity to “shed light” on rare and undiagnosed diseases: an invitation to attend a live event at Harvard Medical School, in-person or virtually
Event co-hosted by Wilhelm Foundation and Undiagnosed Diseases Network Foundation (UDNF) on National Undiagnosed Diseases Day
Of the estimated 30 million Americans who are living with a rare disease, many are still undiagnosed, living in a “holding pattern” without a dedicated treatment plan to assign to their illness.
Be it a rare disease parent, caregiver, or patient, the common goal is to obtain an accurate diagnosis and being relieved of the daily burden of living with an undiagnosed disease. And this burden goes well beyond the patient—our entire healthcare system is impacted by this expensive and emotional diagnostic mystery.
What?
With the goal of shedding light on rare and undiagnosed diseases, the Wilhelm Foundation, alongside the Undiagnosed Diseases Network Foundation, is convening an expert panel discussion from medical science, public policy and advocacy organizations at a live event at Harvard Medical School.
The event was specifically scheduled to coincide with International Undiagnosed Diseases Day to support the international conversation about raising awareness and advocating for better resources.
The 3rd Annual Undiagnosed Disease Day Event
Harvard Medical School
Gordon Hall 106 Waterhouse Room
Boston, MA 02115
April 29th, 2024 (9:00 to 11:30 AM EST)
Panelists include, but are not limited to:
- Helene Cederroth, co-founder of Wilhelm Foundation
- Amy Gray, CEO, Undiagnosed Diseases Network Foundation (Washington, DC)
- Christine McGarvey, UDNF PEER member and the Pennsylvania State Ambassador for NORD (Springfield, PA)
- William A. Gahl, director of undiagnosed diseases program at NIH (Bethesda, MD)
- Elizabeth Feig, genetic counsellor at Brigham Women’s Hospital (Boston, MA)
- Liam Harazim, patient advocate (Boston, MA)
Why?
Millions of people are living with a rare disease that has not yet been identified and assigned a name by medical science.
Global impact: The National Institutes of Health (NIH) estimates that between 300–400 million globally are living with a rare undiagnosed disease.
Waiting for diagnosis: The average time for an accurate diagnosis of a rare disease is about 4–5 years, sometimes spanning over a decade. As patients wait for their diagnosis, they are considered undiagnosed.
Proportion undiagnosed: Despite recent progress by gene panels, microarrays and exome sequencing, only 25–35% of rare undiagnosed patients are estimated to have been diagnosed.
How?
In-person registration (space is limited): RSVP by April 18 to Glenn Silver or Brynne Hitten, listed below.
Glenn Silver: 973-818-8198, glenn.silver@finnpartners.com
Brynne Hitten: 917-525-9069, brynne.hitten@finnpartners.com
Online Registration: Access udnf.org/undiagnosed-day
