"It was because of me attending the Rare Summit that I was able to get the ball rolling with NIH GARD to update the web page for COL6A CMD. The power of NORD - bringing stakeholders together to make things happen!"
-Ohio State Ambassador for NORD's Rare Action Network , Charlene York
"Leaving this conference, I couldn’t help but feel that I had joined a rare disease family I never knew I had."
-Patient Advocate, Chris Anselmo
"Inspiring and informative. I was brought to the realization that though I may feel my ‘disease’ is the only one – there are many who have their own struggles."
-Research Nurse III, Cincinatti Children’s Hospital Medical Center
"The NORD Summit was the singular opportunity that I have had to interact and network with others from patient orgs dealing with rare diseases. I learned as much in the networking breaks as I learned in the sessions. I leave with new knowledge I don’t think I could have gained anywhere else."
-Director of Research, Hemophilia Federation of America
"Fantastic meeting of all the relevant stakeholders."
-Senior Director , Medical Affairs, Cytokinetics, Inc.
"Incredibly valuable meeting to connect stakeholders, share information and provide inspiration and motivation."
"Great conference! I am excited to get back to my organization and work on some projects inspired by the information that was shared."
-President & CEO, EDSers United
"For both ATOF and myself, attendance to last year's Summit changed our nonprofit and put us years ahead in research and collaborations with our medical partners. It is imperative that we are able to participate again this year. We are saving lives because of you!"
-A Twist of Fate