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Learn More Posters 2020 Summit Registration
Given the impact of the COVID-19 pandemic, connecting stakeholders and advancing meaningful dialogue is now more critical than ever to improving the lives of over 25 million Americans living with rare diseases. With this in mind, the 2020 NORD Rare Diseases & Orphan Products Breakthrough Summit will now be presented as a virtual event on October 8 and 9.

Rare Diseases and Orphan Products Breakthrough Summit

Virtual Summit: October 8 – 9, 2020

As technology in rare disease accelerates, and with topics related to public health and drug pricing being top priorities in government, we must act now to drive innovation, collaborate for better outcomes, and assure access to care for all.

Why You Should Attend

  • Timely topics including the COVID-19 pandemic’s impact on the rare disease community, drug pricing, advancements in technology, tools for accelerating cures and more
  • A blue-ribbon panel of public health experts, patient advocates, and industry leaders on how to build a stronger healthcare system from what we’ve learned this year
  • One-on-one networking opportunities with rare disease innovators
  • The 2020 Rare Impact Awards, to premiere exclusively online in their entirety for the first time ever, on October 9!

Media Guidelines & Code of Conduct


Download Full Agenda

Rare Impact Awards

For the first time, NORD will present the 2020 Rare Impact Awards® as an online streaming event, premiering on October 9th.

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"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