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"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

"Great event! Thank you!"

-ECD Global Alliance

"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

"Legislative panel was great!"

"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

"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."

-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

Key Contacts

2016 General Inquiries
Carrie Lucas
clucas@rarediseases.org

2016 Sponsorship Inquiries
Derek Gavin
dgavin@rarediseases.org