NORD Summit 2021 – Overview

Registration is OPEN for the 2021 NORD Summit, one of the largest multi-stakeholder events in the rare disease world!  

NORD is thrilled bring our conference right to your computer screens again in 2021. Every year, the Rare Diseases and Orphan Products Breakthrough Summit brings together members of the rare disease community. Join disease experts and leaders from patient advocacy groups, government, industry, and academia to unlock new insights, network in a positive virtual environment, and discuss critical topics in the rare diseases and orphan products field. 

Limited free passes may be available. Click here to learn more.

Why attend?

  1. Share questions and insights LIVE during sessions 
  2. Access the latest resources and tools
  3. Tune in for exclusive live content and entertainment 
  4. Explore the interactive virtual platform for fun prizes and giveaways 
  5. Visit the exhibit hall to connect with event sponsors 
  6. Schedule 1:1 networking sessions that fit your schedule 



What is the Rare Diseases and Orphan Products Breakthrough Summit®?

The Rare Diseases and Orphan Products Breakthrough Summit, or NORD Summit, is one of largest multi-stakeholder events in the rare disease community. The two-day summit brings together members of the rare disease community from across the globe, including rare disease experts and leaders from patient advocacy groups, government, industry, and academia to share new insights, network in a positive and practical virtual environment, and discuss critical topics in the rare diseases and orphan products field.

When is the event and who can attend?

NORD Summit will be held Monday, October 18 and Tuesday, October 19, 2021. All are welcome to attend!

What does it cost to attend?

Pricing can be found here. We try our best to keep costs reasonable for the rare disease community while providing a memorable experience for all attendees. Access to virtual events is single sign on meaning one paid registration gives access to one device. If you wish to log in from multiple devices from within your home, you will have to purchase additional registrations.

Is the event in person or virtual?

To help keep our community safe during the COVID-19 pandemic, we feel it is best to provide our content in a virtual setting in 2021. This will ensure that our attendees will not have to travel and can instead take advantage of all that this program has to offer from the safety of their own homes.

What exactly does virtual mean?

We will be providing you all the content directly to your screen. Access the general sessions, breakout workshops, networking opportunities as well as an exhibit hall via an interactive virtual platform. Sessions will air and a live chat session will be available, you can visit the exhibit hall and schedule peer-to-peer meetings with other attendees throughout the summit.

What is the agenda for the program?

The agenda is being finalized – visit the website for regular updates!

I want to attend but I cannot spend the whole day in front of my computer; are sessions recorded?

All general sessions and breakout sessions will be recorded so that you may watch them at your
convenience. Content will be available for 30 days after the conference. Unfortunately, we are unable to record our networking sessions; those will only take place live.

Money is tight, are there any opportunities for financial support to attend the Summit?

There are a select number of complimentary passes available to member organization leaders, Rare Action Network state leaders as well as medical professional students. Click here to request more information.

How will I get access to the virtual program?

Access to the virtual program will be provided to you the week of the event in a ‘Know Before You Go’ email. Access will be based on the email you used to register for the event and a password that you will create. Keep this information handy as it will be your access throughout the event. Access to the platform works best with Chrome, Edge or Firefox internet browsers. It is recommended that your internet speed meets or exceeds 4mbps to ensure that all videos will display properly. Check your internet speed here.

Is closed captioning offered?

Yes, all plenary and breakout workshops will be closed captioned. Networking sessions will have
limited captions available; please make sure to note your closed caption needs in the registration form so that we are sure to accommodate you.

How can I post about NORD Summit on social media?

Use the hashtag #NORDSummit and feel free to tweet at NORD (@rarediseases), tag us on Instagram (@nord_rare), or visit/share content from our Facebook page.

Is the event open to the press?

Yes, NORD Summit is free and open to registered members of the media. Visit our media guidelines on the website to learn more about how to register as a member of the press.


Updated July 2021


Download FAQs

NORD Summit External Advisory Committee

Garrett Bergman, MD
NORD Scientific and Medical Advisory Council

Susan A. Berry, MD
NORD Board of Directors

Jade Day
A Twist of Fate-ATS (arterial tortuosity syndrome)

Susan Fernbach, RN
Baylor College of Medicine

Beverley Francis-Gibson
Sickle Cell Disease Association of America

Kerry Jo Lee, MD
FDA Center for Drug Evaluation and Research

Anne R. Pariser, MD
NIH National Center for Advancing Translational Sciences

Samantha Parker

Tamar Thompson

Catherine Vo
University of the Pacific NORD Students for Rare Chapter

FDA Advisory Committee

Rhea Bhatt, MS

Kerry Jo Lee, MD
Acting Associate Director for Rare Diseases, CDER, FDA

Janet Maynard, MD, MHS
Director, Office of Orphan Products Development, CDER, FDA

Vasum Peiris, MD, MPH, FAAP, FACC, FASE
Chief Medical Officer and Director, CDRH, FDA

Audrey Thomas, MS
Physical Scientist, CDER, FDA

Erika Torjusen, MD, MHS
Director, Pediatric Device Consortia and Rare Pediatric Disease and Humanitarian Use Device Designation Programs, OOPD, FDA

Julienne Vaillancourt, RPh, MPH
Policy Advisor and Rare Disease Liaison, CBER, FDA

Cynthia Welsh, MD
Medical Officer, Rare Diseases Team, CDER, FDA

Code of Conduct & Media Guidelines

Click here to download the Code of Conduct for the 2021 NORD Summit

Click here to download the Media Guidelines for the 2021 NORD Summit


  • NORD does NOT sell attendee lists or work with any third parties to sell attendee lists.

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