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Happy Holidays from the PROMOT Network!
As 2025 comes to a close, we want to extend our heartfelt gratitude to all our patient partners, clinicians, researchers, and collaborators across the globe. Your dedication continues to drive our shared mission forward and brings real hope to families living with rare neuromuscular diseases.
Dec 221 min read
Partner Spotlight: Dr. Anita Burgun
Highlighting Dr. Anita Burgun, PROMOT partner advancing data interoperability and collaboration in rare disease research
Nov 172 min read
Deep Dive into Neuromuscular Diseases: CMS, CM, and OPMD
PROMOT advances research on CMS, CM, OPMD, and MFM – four rare neuromuscular diseases – by filling critical data and research gaps
Oct 293 min read
Inside the Common Data Model: What It Is and Why It Matters for Rare Neuromuscular Diseases
Discover how PROMOT’s Common Data Model is transforming rare disease research through data standardization and cross-border collaboration.
Sep 223 min read
Behind the Scoping Reviews: What We Learned from Studying CMS and CM
Explore what PROMOT’s scoping reviews revealed about CMS and CM – and how these insights are shaping future rare disease research and data models.
Aug 63 min read
PROMOT Project: Progress Update – What We’ve Achieved So Far
Celebrating one year of the PROMOT Project – see how we’re advancing rare disease research through collaboration, data, and innovation.
Jul 292 min read
Discover Dr. Cynthia Gagnon’s Interactive Illustrative CV!
Discover Dr. Cynthia Gagnon’s interactive, visual CV and her role in the PROMOT initiative for rare disease research and collaboration!
Jun 301 min read
PROMOT: Putting Patients at the Center of Rare Disease Research
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.
May 202 min read
Patients and Families at the Heart of PROMOT Research
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.
Apr 232 min read
The PROMOT Project: Advancing Research for Rare Neuromuscular Diseases on Rare Disease Day
The PROMOT project, launched in June 2024, is proud to align its mission with Rare Disease Day.
Feb 282 min read
Back to Where It All Began: Barcelona!
This past June, the PROMOT team came together in the stunning city of Barcelona, Spain, for an inspiring kick-off meeting.
Jan 131 min read
Welcome to the PROMOT Website!
We’re excited to launch the official website for Performing a Rare Disease-Oriented Master Observational Trial (PROMOT).
Dec 7, 20241 min read
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