WELCOME!

The PROMOT project is a rare disease research initiative dedicated to understanding the uniqueness of individuals affected by rare neuromuscular conditions. This interdisciplinary study brings together health science researchers and teams from six countries to investigate the factors influencing the severity of disease symptoms, aiming to improve knowledge and personalized care for those impacted. The neuromuscular disorders of interest include oculopharyngeal muscular dystrophy, congenital myopathies, congenital myasthenic syndromes, and myofibrillar myopathy.

OUR VISION

To enhance rare disease care by supporting international collaboration on biomarker discovery, refining clinical prognosis and optimizing clinical trial readiness, thereby ensuring timely and personalized treatment for every affected individual.

Vision

OUR MISSION

To advance the understanding and management of rare diseases through collaborative research, innovative methods and technologies, and patient-centered approaches, striving to improve diagnostics, treatments, and outcomes for individuals worldwide affected by these conditions.

Mission

OUR VALUES

Values

COLLABORATION

Engage patient organizations, patient partners, clinicians, researchers, and ethical/legal experts throughout the project.

INNOVATION

The MOT approach addresses unmet needs in rare diseases, enhancing prognosis and clinical trial readiness through precision medicine.

OUTCOME

Development of LEAP FORWARD platform and guidance for future rare disease research, facilitating improved patient outcomes and clinical trial efficacy.

PROMOT
in numbers

COUNTRIES

INVOLVED

2M€

RESEARCH BUDGET

RESEARCHERS
INVOLVED

PATIENT
PARTNERS

INVOLVED

PROMOT in numbers

FUNDING

The PROMOT project is supported by the European Joint Programme on Rare Diseases (EJP RD).

The project will receive funding from the Canadian Institutes of Health Research (CIHR), and in partnership with Agence nationale de la recherche (France), Health Research Board (Ireland), Instituto de Salud Carloss III (Spain), IRSC – IG, Swedish Research Council (Sweden), and Swiss National Science Foundation (Switzerland), under grant agreement No. 02424 – 000.