Get Involved
Whether you are newly diagnosed, have been living with melorheostosis for years, or simply want to support the cause, there are meaningful ways to get involved and make an impact.
Association Events
Every two years, the Melorheostosis Association hosts a special conference that brings together patients, families, researchers, and medical professionals from across the world.
These gatherings are more than just events—they are opportunities to: learn about the latest research and medical advancements, hear directly from experts and specialists, share experiences with others who truly understand, and build lasting friendships and support networks
Many attendees say this is the first time they’ve met someone else with melorheostosis. The sense of connection and community is truly powerful.
Participate in Research
The National Institutes of Health has an ongoing natural history and pathogenesis study designed to better understand the causes, progression, and biological mechanisms of the disease. Participants undergo detailed clinical evaluations and are followed over time. We encourage all adult patients to participate in the clinical assessments, follow-up protocol, and research-focused testing to identify gene mutations and potential treatment pathways.
This work has already contributed to important discoveries, including identification of somatic mutations (e.g., MAP2K1, SMAD3) that help explain disease development and may inform future treatments or therapies.
More Ways to Get Involved
The Melorheostosis Association is here to connect patients, families, caregivers, and supporters in a shared mission: to advance research, raise awareness, and improve lives. Support that mission through fundraising, spreading awareness with Melo gear, or putting your pin on the patient map.
Join Our Online Community
Get to know other patients and supporters from around the world by joining our private Facebook group. Share your story, learn from others, and stay connected to the community. Patients and supporters in the group frequently share tips for pain management, regional doctors or recommended professionals, as well as navigating life with a rare disease. Click to request to join today!