Scroll through the images to view highlights from the event
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.
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.
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.
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.
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.
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.
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.
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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:
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
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.
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.
