Upcoming - Rare Community - Events/ Webinars/Meetings
2026 RARE Drug Development Symposium
2026 RARE Drug Development Symposium
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.
Rally for Medical Research
2026 RARE Drug Development Symposium
2026 RARE Drug Development Symposium
SEPTEMBER 17th
The Rally for Medical Research was launched in 2013 with one urgent purpose: to make funding for the National Institutes of Health (NIH) a national priority. What began as a single day of advocacy has become an annual nationwide movement uniting millions of patients, advocates, researchers, clinicians, and partner organizations. Each September, Rally participants carry the call to Capitol Hill, urging Congress to provide robust and predictable NIH funding. In these face-to-face meetings, lawmakers see what is at stake. Without sustained investment, progress halts, trials close, and patients pay the price. With strong support for NIH, research advances and lives are saved.
Newborn Screening Bootcamp
2026 RARE Drug Development Symposium
NORD Rare Disease and Orphan Products - Breakthrough Summit
SEPTEMBER 24th,
- Bootcamp 10 a.m. - 4 p.m. ET
- Reception 4 p.m. - 5 p.m.
Location:
1500 K St NW #1100
Washington, DC 20005
Co-hosted by:
The EveryLife Foundation for Rare Diseases
and Expecting Health,
Newborn Screening Bootcamp provides attendees with the opportunity to learn about and discuss developments in newborn screening with experts and patient advocates currently navigating the newborn screening process – as we also work to facilitate engagement across our ecosystems. Panels will focus on ways advocates interact with the newborn screening system, highlighting the work of federal agencies as well as opportunities for advocates to sit on various federal and state newborn screening-related committees.
NORD Rare Disease and Orphan Products - Breakthrough Summit
NORD Rare Disease and Orphan Products - Breakthrough Summit
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
NORD Rare Disease and Orphan Products - Breakthrough Summit
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
NORD Rare Disease and Orphan Products - Breakthrough Summit
RDLA (Rare Disease Legislative Advocacy) - Monthly Meetings
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.
The Disorder Channel Film Club
NORD - National Organization for Rare Disorders - Events
NORD - National Organization for Rare Disorders - Events
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.
NORD - National Organization for Rare Disorders - Events
NORD - National Organization for Rare Disorders - Events
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
NORD - National Organization for Rare Disorders - Events
Global Genes - Events
Browse and find upcoming Global Genes in-person
or virtual RARE disease events by date and location hosted around the world.