"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,
""Leaving this conference, I couldn’t help but feel that I had joined a rare disease family I never knew I had." "
"I want to thank you again for the opportunity to attend the NORD meeting this week! It was a fantastic event. The content was very informative and I made some great networking connections."
-Early Design Campaign Manager,
Pulmonary Hypertension Association
"Well-chosen, expert speakers."
A-T Children’s Project
"Fantastic meeting of all the relevant stakeholders to bringing treatments to patients."
Medical Affairs, Cytokinetics, Inc.
"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,
"Excellent sessions [that] demonstrated the way in which various FDA departments impact rare disease drug development."
Head Regulatory, Rare Diseases, GlaxoSmithKline
"Excellent networking opportunity… The number of patient advocates in attendance speaks volumes for your organization's commitment to meaningful patient engagement."
-Canadian Organization for Rare Disorders
"I made many new contacts in the rare disease patient advocacy, government and industry fields."
"A fantastic event. The content was very informative and I made some great networking connections."
-Associate Director of Research Programs,
Foundation for Prader-Willi Research
"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,