Upcoming - Rare Community - Events/ Webinars/Meetings
The Disorder Channel Film Club
June, TBD - 2026 - 8 p.m. ET
Inspiring Rare Disease Creative Action & Connection through Film
The aim of this film club is to expand awareness of the rare disease lived experiences, inspire creative action toward positive change and support the rare disease community through impactful documentaries.
Rare Across America 2026 - Registration will close on Friday, July 17, 2026.
AUGUST 14TH - 21ST
Rare Across America is the opportunity to meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story.
2026 RARE Drug Development Symposium
SEPTEMBER 9TH - 11TH
Rare disease patient advocates are taking the lead in research like never before, driven by the urgent need for new treatments. During this 2.5 day event, attendees will have a mix of main stage sessions, targeted breakouts, group presentations, and hands-on workshopping. Whether you’re initiating research efforts or looking to refine your strategy, this symposium offers practical insights to accelerate progress in research strategies and activities.
NORD Rare Disease and Orphan Products - Breakthrough Summit
OCTOBER 25TH - 27TH
Shape the future of rare disease treatments, research and policy at the NORD® Rare Diseases and Orphan Products Breakthrough Summit.® Together, we can advance innovation for the more than 30 million Americans – and more than 400 million people worldwide – with rare diseases!
RDLA (Rare Disease Legislative Advocacy) - Monthly Meetings
Once a month RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participating in the calls does not imply support for any of the policy proposals or legislation that are discussed or promoted at meetings.
The EveryLife Foundation for Rare Diseases - Events
The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.
NORD - National Organization for Rare Disorders - Events
The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in care, research and policy.
Global Genes - Events
Browse and find upcoming Global Genes in-person
or virtual RARE disease events by date and location hosted around the world.