Key Dates for 2024 Announced

Check back often for updates!


February 12, 2024 – Speaker and Abstract Submissions Open

March 8, 2024 – Speaker Submission Deadline

June 12, 2024 – Abstract Submission Deadline

June 24, 2024 – Registration Opens

July 23, 2024 – Abstract Decision Notifications sent by NORD

September 9, 2024 – Early Bird Registration Closes

September 20, 2024 – Hotel Reservations Deadline

October 20, 2024 – NORD Rare Diseases & Orphan Products Breakthrough Summit Welcome Reception

October 21 -22, 2024 – NORD Rare Diseases & Orphan Products Breakthrough Summit

 

Highlights from The
2023 NORD Breakthrough Summit

October 16-17, 2023  |  Washington, DC

 

An Inspiring Opening Keynote

Day one of the event began with a Patient and Caregiver Keynote Address, featuring rare community members Alex Flipse, mother and son Rixys Alfonso and Devin Alvarez, along with CEO of To Cure A Rose Foundation, Casey McPherson. This inspirational keynote emphasized the importance of the Orphan Drug Act, being your own advocate, and being part of the rare disease community.

Casey McPherson gave an unforgettable and emotional performance of his song, “I Am Enough,” which he wrote about his experience as a single father to his daughter who lives with a rare disease.

Click through the images to view highlights from the event

Remarkable Poster Abstracts

The robust poster hall showcased over 80 poster abstracts on a variety of categories including: Innovative Research in Rare Diseases and Orphan Products, Medical Education Advancement in Rare Diseases and Orphan Products, Patient Community Building, Health Equity, and more.

Attendees enjoyed a dedicated poster hall reception, lightning round poster presentations in the main ballroom featuring the top seven posters, and plenty of networking time built into the agenda where poster authors were able to discuss their work with key stakeholders in the rare disease community.

Timely and Impactful Discussions

Day one of the event featured the standout panel, “The Impacts of the Inflation Reduction Act on the Rare Community.” Moderator Heidi Ross, NORD’s Vice President, Policy and Regulatory Affairs, along with panelists Kristi Martin, Chief of Staff, Centers for Medicare and Medicaid Services, Crystal Kuntz, Senior VP for Healthcare Policy & Research, Biotechnology Innovation Organization (BIO), Anna Kaltenboeck, Principal, ATI Advisory, and Connor Sheehey, Senior Health Policy Advisor, Senate Committee on Finance, discussed how the IRA and other current policy initiatives may affect orphan product development and patient access to care.

NORDY Takes the Stage

NORD’s mascot, NORDY the Zebra, made an appearance at the 2023 NORD Breakthrough Summit! Hundreds of attendees shared their photos with NORDY on social media, along with their enthusiasm for continuing to raise awareness for and celebrating the rare community.

Breakfast with the FDA Commissioner

Day two of the 2023 NORD Breakthrough Summit kicked off with Breakfast with the FDA Commissioner! Dr. Robert Califf, the United States Commissioner of Food and Drugs, joined Peter L. Saltonstall, NORD’s President and CEO, to discuss highlights from the past year in rare disease along with future goals for the rare disease space. A big takeaway was the growing need for more medical researchers, geneticists, and regulators – the time to begin a career in this field is now.

Forging New Connections

The 2023 NORD Breakthrough Summit provided many opportunities to network with members of industry, government, patient advocacy organizations, and research institutions. With dedicated time to network throughout the entire event, attendees were able to continue the discussion after a plenary, meet with poster authors to discuss research, and talk future collaborations. Our event app made it easy to schedule 1:1 meetings to make new connections and convene with other rare disease leaders.

 

New Education Series Announced!

On the first day of the NORD Summit, we announced the launch of a new education series in partnership with the FDA and C-Path titled, “Rare Disease Drug Development: What Patients and Advocates Need to Know,” designed to help patients and advocacy groups understand their essential role in the drug development process so we can produce more and better treatments for rare diseases.

Each course in the series is available in both English and Spanish in a mix of formats to accommodate multiple learning styles, including animated videos, expert interviews, infographics, fact sheets, checklists, and interactive quizzes. The first few courses are available now, and subsequent courses will be released later this year and throughout 2024.

Start learning at learn.rarediseases.org today!

Highlights from Instagram



Up Next! NORD is Headed to the West Coast


Living Rare, Living Stronger®
NORD Patient and Family Forum

WHERE: Hilton Los Angeles, Universal City in Los Angeles, California
WHEN: June 7-8, 2024
WHY:

  • Engage and meet other rare disease patients and families
  • Learn from experts and peers on rare disease topics
  • Access resources and information
  • Surround yourself with a supportive and knowledgeable community

Learn More

The Rare Impact Awards®
WHERE: Universal Studios, California
WHEN: June 8, 2024
WHY: Gather to celebrate and honor the individuals and organizations driving progress and pioneering advancements in rare disease

Learn More

Interested in Sponsoring a NORD Event or Activity?

Corporate sponsorship opportunities are available for Rare Disease Day®, the Living Rare, Living Stronger® Patient and Family Forum, Rare Impact Awards®, and the Breakthrough Summit®. The generosity of our sponsors supports direct program costs and allows for patients and families to participate. Benefits vary by event and sponsorship level, please inquire for more information.

 

Continue Your Support for the Rare Disease Community

Your tax-deductible donations are advancing NORD’s programs, driving research, providing patient assistance, expanding education, and more. Every vital dollar is supporting the rare disease community and transforming lives.

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