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Patient Advocacy Pavilion

Media Partners

"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."

-Science Coordinator, A-T Children’s Project

"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."


"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

"So many great ideas and plans of action have been shared at this inspiring event."

-President & CEO, EDSers United

"I learned a great deal, which I intend to put to use within my program."

-Early Design Campaign Manager, Pulmonary Hypertension Association

"Excellent sessions [that] demonstrated the way in which various FDA departments impact rare disease drug development."

-Senior Director, 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."

-President, XLH Network

"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

"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, Cincinnati 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

"Physician panel were all well educated and engaged – did a great job of answering questions. Moderator was excellent."

"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