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Given the continued impact of the COVID-19 pandemic, connecting stakeholders and advancing meaningful dialogue is more critical than ever to improving the lives of over 25 million Americans impacted by rare diseases. The 2021 NORD Rare Diseases and Orphan Products Breakthrough Summit will bring the rare disease community together for education, collaboration and networking on October 18 and 19, 2021.

Rare Diseases and Orphan Products Breakthrough Summit October 18-19, 2021

Highlights of the 2020 Program Included:

  • Panels featuring leading experts from the FDA and NIH
  • Timely topics including the COVID-19 pandemic’s impact on the rare disease community, drug pricing, advancements in technology, and tools for accelerating cures
  • Subject matter experts covering six breakout tracks featuring: Investment & Business Development, Patient Empowerment, and New Approaches to Advancing Diagnosis
  • Small, targeted group networking sessions including: Strategic Planning in the Wake of a Pandemic, Designing Regulatory-Ready Natural History Studies, and Telehealth & Rare Diseases
  • One-on-one networking opportunities with rare disease innovators

Poster submissions: Open now

Download the 2021 Summit Poster Abstract Guidelines

Agenda: See what you missed in 2020

Download the 2020 Agenda

Thank you to our 2020 Supporters!

"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 together to make things happen!"

-Ohio State Ambassador for NORD's Rare Action Network , Charlene York

"Leaving this conference, I couldn’t help but feel that I had joined a rare disease family I never knew I had."

-Patient Advocate, Chris Anselmo

"Inspiring and informative. I was 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 sessions. I leave with new knowledge I don’t think I could have gained anywhere else."

-Director of Research, Hemophilia Federation of America

"Fantastic meeting of all the relevant stakeholders."

-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 inspired by the information that was 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

General Inquiries | [email protected]
Sponsorship | [email protected]