""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 to make things happen!""
-Ohio State Ambassador for NORD,
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. 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 session. I leave with new knowledge I don’t think I could have gained anywhere else."
-Director of Research,
Hemophilia Federation of America
"This has been a successful meeting between my spiritual and emotional dedication to fellow RD patients and the scientific & regulatory experts with their valuable lot of tools to help us navigate the confusing aspects of being a good advocate."
-Director of Support Groups,
CSRF
"Fantastic meeting of all the relevant stakeholders to bringing treatments to patients."
-Senior Director ,
Medical Affairs, Cytokinetics, Inc.
"Incredibly valuable meeting to connect stakeholders, share information and provide inspiration and motivation."
-Sanofi-Genzyme
"Great conference! I am excited to get back to my organization and work on some projects that are inspired by the information 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
