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Rare Diseases and Orphan Products Breakthrough Summit

NORD’s Rare Diseases and Orphan Products Breakthrough Summit is the largest and most meaningful multi-stakeholder event of its kind – historically featuring over 20 speakers from the FDA, participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product innovation, investment and commercialization.

The 2016 Breakthrough Summit is your opportunity to collaborate with the top leaders from the FDA, NIH, industry, patient groups, payers and research institutions to address the progress and innovations in rare disease diagnosis, treatment, patient engagement and market access of orphan products.

The 2016 keynotes include FDA Commissioner, Dr. Robert Califf; parent advocate and co-founder of, Kristen Gray; and senior policy analyst at Prevision Policy, Kate Rawson (read more).

New for 2016

NORD’s Conference networking app helps you and your colleagues see who’s attending and schedule one-on-one meetings in advance.  Plus, roundtable discussions during Lunch & Learn sessions create opportunities for robust, intimate discussions.

Call for Poster Abstracts


Researchers, whether they be students or professionals, interested in presenting their rare disease research to a large and diverse audience are encouraged to submit poster abstracts for the NORD Summit.  The theme for poster sessions at the summit will be “Life-Transforming Treatments” with four topic areas that researchers can focus on. More information and an application is available here.

Abstracts Due: Friday, August 19

"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."


"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

Key Contacts

2016 General Inquiries
Carrie Lucas

2016 Sponsorship Inquiries
Derek Gavin


Sponsorship Inquiries
Alexa Moore

General Inquiries
Ashley Worrell

Roberts Apse