Patient representatives who missed the recent NIH webinar regarding the planned expansion of the NIH Undiagnosed Diseases Program may still submit input on the questions discussed.
Responses from patient organizations to any or all of the questions listed below may be sent directly to the NIH Office of Rare Diseases Research: firstname.lastname@example.org.
In July, NIH announced plans to expand its Undiagnosed Diseases Program. While these plans are still in the early stages, the intent is to create 5 to 7 diagnosis centers offsite from the NIH campus. Responses to the questions will be considered, along with other information from other sources, in the selection process for clinical sites for the expansion.
Read about the planned expansion of the Undiagnosed Diseases Program.
QUESTIONS DISCUSSED IN THE WEBINAR
What are the major barriers to obtaining a diagnosis?
Ready access to specialists, including:
Travel requirements (restrictions or limitations due to disease), including:
Ease of access to newer diagnostic tests, including:
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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