PROMOT’s Vision for 2026: Where Are We Heading?

ameliefournier4
Jan 12
2 min read

As PROMOT looks ahead to 2026, our network is entering an exciting new phase—one driven by collaboration, innovation, and a shared commitment to improving the lives of individuals living

with rare neuromuscular diseases. Over the past year, PROMOT has strengthened its foundations through coordinated international partnerships, patient engagement, and advances in our research infrastructure. Now, we’re ready to build on that momentum.

One of PROMOT’s core priorities for 2026 is expanding the role of patient partners across all stages of the project. Their lived experience continues to shape our priorities, refine our tools, and ensure our work remains grounded in real-world needs.

In the coming year, PROMOT plans to:

Strengthen co-design processes for research tools and communication materials
Involve patient partners more closely in knowledge mobilization efforts
Support patient-led contributions to PROMOT’s digital presence, including storytelling and social media initiatives

This year, we aim to foster an even more inclusive environment where patient voices guide decision-making and project growth.

Advancing Research Tools, Data Quality, and Scientific Output

2026 will be a significant year for PROMOT’s scientific milestones. Building on ongoing evaluation of questionnaires and other research tools, we are moving into a period of validation, analysis, and publication.

Our priorities include:

Publishing key papers, including our scoping reviews and the ontology—representing the first version of PROMOT’s common data model
Commencing the VPIT feasibility study, which will determine whether this tool should be included in the arsenal of outcome measures for the future natural history study
Launching proteomics analysis to generate critical proteomic data that will deepen understanding of disease mechanisms
Taking concrete steps toward designing the natural history study, including protocol development and early preparations for ethics submissions
Advancing the LEAP FORWARD platform, a major step in PROMOT’s long-term vision for integrated, patient-centred digital infrastructure

These efforts reflect PROMOT’s commitment to producing high-quality science that will drive rare disease research forward.

Strengthening International Collaboration

PROMOT’s work spans several countries and institutions, and in early 2026, we will come together for an in-person network meeting. This meeting will be an opportunity to review progress, reflect on milestones achieved, and collaboratively determine how we move forward together.

Beyond this gathering, our 2026 collaboration goals include:

Enhancing coordination across PROMOT’s scientific and clinical teams
Increasing collaboration with global rare disease organizations
Sharing project progress at major international scientific meetings
Hosting interactive workshops that foster dialogue among clinicians, researchers, and patient communities

Through these efforts, PROMOT will continue to amplify its impact across borders.

Growing Our Communication and Knowledge Mobilization Efforts

Clear, accessible communication is essential to PROMOT’s mission. In 2026, we plan to expand our knowledge mobilization strategy by:

Increasing the visibility of PROMOT through social media and community updates
Developing accessible educational materials for patients, caregivers, and clinicians
Highlighting stories from across the network to strengthen engagement and build trust

With a new focus on storytelling and modern digital outreach, PROMOT aims to make its work more visible, relatable, and impactful.

Looking Ahead

As we enter 2026, PROMOT remains committed to advancing rare disease research through global collaboration, patient-centred design, and scientific excellence. The year ahead will bring new milestones, deeper partnerships, and opportunities to elevate the voices of those at the heart of our mission.

PROMOT’s vision for 2026 is clear: to create meaningful, lasting change for the rare disease community—together.

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