Virtual Zoom | January 18, 2026 at 8:00-8:45pm Eastern
Cure JM is launching a new virtual workshop designed to help young adults with juvenile myositis (JM) learn how advocacy works and how personal stories can make an impact in research, policy, and Rare Disease Day conversations.
In this 45-minute Zoom session, participants will learn:
- What advocacy means in plain language
- How patient voices are used by researchers, policymakers, and advocacy organizations
- How to craft a short, effective advocacy story (60–90 seconds)
- What not to worry about—no medical expertise, perfection, or public speaking experience required
This is the only required live training for young adults who want to participate in Cure JM’s Rare Disease Day advocacy and storytelling efforts.
What happens after the workshop?
Participants will be invited to submit a short advocacy story in one of two formats:
- Written story: 150–300 words
- Video story: short and informal, 45-90 seconds
Stories may be used in Cure JM’s Voices of JM advocacy booklet, Rare Disease Day conversations, and optional digital storytelling efforts. All participants will review and approve their story before anything is shared, and light coaching support is available if desired.
How to submit your story:
Stories should be submitted by 2/5/26 a rare@curejm.org
Clear prompts and instructions will be sent in a follow-up email after the workshop.