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Who Attends

This Summit is designed for those stakeholders involved in the research, development, access and support of orphan products in the rare disease community. Researchers from academia; drug and device companies; patient organizations and advocates; policy experts and government organizations responsible for rare disease research and orphan product oversight take part in this in-depth and innovative Summit. Key areas of responsibility and focus include:

  • Patient Services
  • Access
  • Advocacy
  • Clinical Development
  • R&D
  • Reimbursement
  • Health Policy / Affairs
  • Regulatory Affairs
  • Corporate Communications


Why You
Should Attend

  • Over 60 speakers
  • 6 In-conference tracks
  • Groundbreaking keynotes
  • 3 Focused tracks of content
  • Meaningful patient participation
  • Expansive poster session highlighting the brightest minds in Rare Disease Research, innovation, awarenessband education

NORD Summit Opportunities

It’s a chance to connect…
Network with patients, advocates, policy leaders, regulators, industry executives and researchers. Hundreds of engaged participants in a multi-faceted and meaningful meeting, with dedicated networking time within a fun and relaxed setting.

It’s a chance to explore…
Customize your onsite experience by choosing from multiple concurrent sessions and breakout summits. Explore the vast array of posters, exhibits and presentations to discover some of the newest breakthroughs and advancements.

It’s a chance to advance…
Gain tangible content, critical updates and innovative ideas to take back to your work. Equip yourself with new knowledge that can advance the dial in rare disease research and orphan treatment access.

It’s a chance to inspire…
Real-life stories of patients and families impacted by rare diseases. Cutting-edge advancements in genetics, research, drug development, diagnosis, treatment and access. Visionary insights on the road ahead.

It’s a chance to transform lives…
Be with the brightest minds in the rare disease community to discover opportunities to transform good medicine into great treatments.

" 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, 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

""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