UDN Sustainability:

The Undiagnosed Diseases Network (UDN) has been an NIH Common Fund program since 2013. The goals of the network are to improve the level of diagnosis and care for rare disease or undiagnosed patients and facilitate research into undiagnosed conditions.

Since Common Fund support is limited to a maximum of 10 years, UDN investigators were charged with creating a sustainability plan to continue network operations after the NIH UDN grants end in FY2022. To help assess the UDN sustainability plan, the NIH invited 29 experts, including patient advocates, healthcare economists, and clinicians, to attend the “NIH Sustainability and Future Directions of the Undiagnosed Diseases Network” workshop, held virtually on April 6, 2020. Each expert was asked to provide feedback about the infrastructure necessary to transition the UDN to a sustainable national resource and assess plans for the transition to the post-Common Fund phase in FY2022. More information about the workshop can be found in the UDN Sustainability Workshop Report.

Learn More About the UDN:

• 2019 ACMG Annual Clinical Genetics Meeting
  Visit the UDN at Booth #201
  April 2-6, 2019
  Seattle, WA
  List of UDN Posters and Talks
   
• National Society for Genetic Counselors Annual Meeting
  Visit the UDN at Booth #407
  November 14 - November 17, 2018
  Atlanta, GA 
   
• American Society for Human Genetics Annual Meeting 
  October 16- October 20, 2018
  San Diego, CA 
  List of UDN Posters and Talks
   
• ACMG Annual Clinical Genetics Meeting 
  April 10 - April 14, 2018
  Charlotte,  NC 
  List of UDN Posters and Talks
   
• American Society for Human Genetics Annual Meeting 
  October 17 - October 21, 2017
  Orlando, Florida 
   
• National Society for Genetic Counselors Annual Meeting
  Visit the UDN at Booth #526
  September 13 - October 16, 2017
  Columbus, Ohio 
   
• ACMG Annual Clinical Genetics Meeting 
  48th Annual March of Dimes Clinical Genetics Conference: The Undiagnosed Diseases Network; Changing the Paradigm of Rare Disease Diagnosis, Treatment and Research 
  March 21 - March 25, 2017
  Phoenix,  AZ 
   
• Keystone Symposium- Rare and Undiagnosed Diseases: Discovery and Models of Precision Therapy 
  March 5 - March 8, 2017
  Boston, MA 
   
• American Society for Human Genetics Annual Meeting 
  October 18 - October 22, 2016
  Vancouver, Canada 
   

UDN Sponsored Meetings:

• Sixth Conference of Undiagnosed Diseases Network International
  June 19 -  June 21, 2018
  Naples, Italy 
   
• Fifth Conference of Undiagnosed Diseases Network International
  August 30 -  August 31, 2017
  Tokyo, Japan 
   
• Fourth Conference of Undiagnosed Diseases Network International
  November 16 -  November 17, 2016
  Tokyo, Japan 
   
• Future Directions for Undiagnosed Diseases Research: The UDN and Beyond 
  March 21, 2016
  Rockville, Maryland 
   
• Third International Rare and Undiagnosed Diseases Conference 
  February 18, 2016
  Vienna, Austria 
   
• Second International Rare and Undiagnosed Diseases Conference 
  June 26 - June 27, 2015
  Budapest, Hungary 
   

• First International Rare and Undiagnosed Diseases Conference
  September 2014 
  Rome, Italy