Finalized Consortium Charter
We are proud to share the finalized 6-May-2025-Charter_ICFDMAS. This document formalizes our structure, governance, and mission, and reflects years of collaborative work between patient advocates, clinicians, and researchers. It lays the foundation for continued global cooperation in advancing care and research for FD/MAS.

Highlights of the Charter include:

• ICFDMAS’s mission to address unmet needs in FD/MAS through multi-stakeholder, patient-centered research
• Defined membership structure and Executive Committee representation, see the membership application page for more info on how to become a member
• Procedures for decision-making, meetings, elections, and amendments
• Responsibilities of subcommittees and advisory boards
• A shared commitment to transparency, ethical standards, and inclusive international collaboration

Next Steps – Membership Form
As part of the harmonization of our membership, we kindly ask you to complete this APPLICATION-MEMBERSHIP-INTERNATIONAL-CONSORTIUM-FD_MAS and return it to info@icfdmas.com. Once approved by the Executive Board, your name and institution (with your consent) will be added to the ICFDMAS website. For patient associations only the associations contact details will be visible on the website. There are currently no membership fees. This will be re-evaluated annually by the General Assembly based on the Consortium’s priorities and needs.