FOR PATIENT ORGANIZATIONS
Join without having to endorse a treatment before the evidence is ready.
Organizations can participate at different levels—from observing and sharing information to co-developing research, safety, and access infrastructure.
Observer
Receive updates, attend open briefings, and follow the evidence landscape without making a formal scientific or financial commitment.
Scientific member
Nominate a scientific representative, contribute disease-specific knowledge, and participate in readiness assessment and research planning.
Development partner
Help fund or execute defined preclinical, biomarker, regulatory, safety, or clinical-development projects.
What your organization brings
- Family priorities and lived experience
- Scientific and clinical relationships
- Registries, natural-history efforts, or contact networks
- Available disease models and unpublished knowledge
- Fundraising, advocacy, and communications capacity