PROMOT outlines its 2026 vision – advancing research, strengthening patient partnerships, and uniting globally to drive rare disease progress.

Highlighting Dr. Anita Burgun, PROMOT partner advancing data interoperability and collaboration in rare disease research

PROMOT advances research on CMS, CM, OPMD, and MFM – four rare neuromuscular diseases – by filling critical data and research gaps

Discover how PROMOT’s Common Data Model is transforming rare disease research through data standardization and cross-border collaboration.

Explore what PROMOT’s scoping reviews revealed about CMS and CM – and how these insights are shaping future rare disease research and data models.

Celebrating one year of the PROMOT Project – see how we’re advancing rare disease research through collaboration, data, and innovation.

Discover Dr. Cynthia Gagnon’s interactive, visual CV and her role in the PROMOT initiative for rare disease research and collaboration!

Discover how the PROMOT project is transforming rare neuromuscular disease research through a patient-centered, multi-country approach. Learn about its innovative LEAP platform, interdisciplinary methods, and goals to identify new therapeutic targets.

We invite you to learn more about the individuals who are helping shape PROMOT’s mission. Our patient and family partners come from diverse backgrounds and bring a wealth of insight, resilience, and motivation to this work. Discover why they chose to join the PROMOT Network, what inspires their involvement, and the changes they hope to see in rare disease research and care. 

The PROMOT project, launched in June 2024, is proud to align its mission with Rare Disease Day.

This past June, the PROMOT team came together in the stunning city of Barcelona, Spain, for an inspiring kick-off meeting.

We’re excited to launch the official website for Performing a Rare Disease-Oriented Master Observational Trial (PROMOT).