FEDRA, the Federation of Rare Diseases of Portugal, is a federation of associations supporting people affected by rare diseases. Established in 2008, it brings together member organisations and is part of ALIBER and EURORDIS. Based in Lisbon, FEDRA works to raise awareness of rare diseases and promote collaboration among associations, partners and the wider community.

The organisation shares information and news about rare diseases, relevant legislation and its activities. It also hosts events and educational initiatives, including national meetings and webinars on topics such as rare-disease action plans and inclusion in schools. Through these activities, FEDRA encourages discussion of the challenges faced by people with rare diseases and the importance of inclusive environments.

Associations can learn about joining FEDRA, while organisations and other interested parties can explore partnership opportunities. The federation also publishes updates through its website, newsletter and social media channels. FEDRA’s work is focused on connecting the rare-disease community in Portugal, supporting the visibility of member associations and helping keep people informed about developments and activities in the field.