PROMOT Project: Progress Update – What We’ve Achieved So Far
- ameliefournier4
- Jul 29
- 2 min read
Since the PROMOT Project launched with its dynamic kick-off meeting in Barcelona in June 2024, our Consortium has made meaningful strides in laying the groundwork for innovative research in the rare disease field. As we celebrate the one-year mark, we are excited to share the progress we’ve made and how our collaborative efforts are shaping the path forward.
Setting the Stage: From Vision to Action
The PROMOT Project was conceived with a bold vision: to enhance the identification, understanding, and treatment of rare diseases by harnessing cutting-edge technologies and fostering cross-disciplinary partnerships across Canada and Europe. In the months following our launch, we've successfully mobilized a diverse network of clinicians, researchers, patient advocates, and technical experts who are united by a shared mission.
Key Achievements to Date
See what we’ve accomplished so far – view our key achievements in the infographic.
Looking Ahead
As PROMOT enters its second year, we’re transitioning from foundation-building to large-scale implementation. Upcoming priorities include:
Scaling our digital infrastructure and refining the LEAP FORWARD platform to support integrated data sharing and analysis.
Launching pilot studies that test the Master Observational Trial (MOT) framework in real-world settings for rare neuromuscular diseases.
Hosting our second Consortium Meeting in 2026, where partners will reconvene to evaluate our progress, exchange insights, and plan for the next phase of collaborative research.
The PROMOT Project is more than a research initiative—it’s a shared commitment to transforming how we approach rare diseases through innovation, inclusion, and impact.
By uniting communities, integrating data, and harnessing the power of technology, we aim to chart a new course for rare disease diagnosis, treatment, and care.
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