NORD Rare Diseases & Orphan Products Breakthrough Summit

NORD Leads the Way: Influential Rare Disease Stakeholders from FDA, Patient Organizations, and Industry Will Gather for #NORDSummit 2023

Join the National Organization for Rare Disorders (NORD®) October 15-17, 2023 for the Rare Diseases and Orphan Products Breakthrough Summit. This exciting event brings together over 900 rare disease advocates, experts, and stakeholders from around the world to tackle the most pressing issues facing the rare disease community. We will focus on the most critical topics to the rare disease community, including the impact of the Inflation Reduction Act, gene editing, equitable access to care, and more. The 2023 NORD Breakthrough Summit promises a full program of productive discussions and collaborative solutions.

Key Dates

February 13, 2023 – Speaker and Abstract Submissions Open

March 10, 2023 – Speaker Submission Deadline

June 15, 2023 – Registration Opens

July 14, 2023 – Abstract Submission Deadline

August 15, 2023 – Abstract Decision Notifications by NORD

September 1, 2023 – Early Bird Registration Closes

September 15, 2023 – Hotel Room Block Closes

October 15, 2023 – NORD Breakthrough Summit Welcome Reception

October 16 -17, 2023 – NORD Breakthrough Summit

What people are saying

“What an incredible lineup of speakers. Thank you for the well-organized machinery that allowed us opportunities to arrange meetings. Thank you for the opportunity to present on the vitally important topic of transition of care.”

Director of Development and Strategic Partnerships, The Myositis Association

“NEMSN’s Board thanks you very kindly for your scholarship to our organization to attend the 2020 Rare Summit. I was able to watch a little in person and then I was able to access NORD’s session files. NEMSN’s Board had picked out six of them as particularly relevant to us. We send our appreciation!”

Lois Vierk, President, National Eosinophilia Myalgia Syndrome Network

“It was a fantastic conference and well organized; I have only heard positive comments! People loved the speakers, the timely topics, the exhibit “hall”, and networking opportunities. The virtual approach can’t replace in-person conversations, but can reach people and enable important connections. Thank you to all the folks at NORD for your remarkable efforts to make this such a success.”

Susan Fernbach, RN, Director of Genetic Outreach, Baylor College of Medicine and member of NORD’s Summit Advisory Committee

2023 NORD Breakthrough Summit Sponsors




Supporters & Exhibitors

CVS Health logo
Eurordis Logo
Genome Insight logo
Malan Syndrome Foundation logo
Wake Up Narcolepsy

Media Partners

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2022 NORD Breakthrough Summit Recap

NORD Meets the Moment: 800+ Key Rare Disease Leaders from FDA, Patient Groups, and Industry Convene for #NORDSummit

On October 17 and 18, the National Organization for Rare Disorders (NORD®) hosted the Rare Diseases and Orphan Products Breakthrough Summit. Over 830 enthusiastic attendees from across the globe convened to address and take action on the opportunities and challenges facing the rare disease community. Featuring content on the most critical rare issues – including accelerated approval, newborn screening, equitable access to care – the 2022 NORD Summit was host to a week of conversations and collaborations in the global community.