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Completed project
LGMD Community Advisory Board
Industry sponsors developing treatments for limb-girdle muscular dystrophy often lack structured access to lived-experience insight on disease burden and trial readiness.
Rare disease · Patient engagement in R&DGlobal
- Partners4Patients Foundation's role
- Non-profit legal and organisational framework, industry collaboration facilitation, contract and governance management
- Outcome
- Independent, structured patient input shaping industry research and clinical development programmes.
About the project
Providing the LGMD Community Advisory Board, a global, patient-led initiative where trained LGMD patient experts advise industry sponsors on research, clinical development, standards of care, and patient-relevant challenges, with a non-profit legal and organisational framework, facilitated industry collaboration, and the contract, governance, and project management support needed for meaningful, independent patient engagement.