VISION & MISSION

The global alliance of Persons Living with a Rare Disease and their families across all countries and across all rare diseases.

TFE3-associated neurodevelopmental disorder – France

Throughout a lifetime, Persons Living with a Rare Disease (PLWRD) and their families face multiple forms of social discrimination, as well as common challenges in accessing diagnosis and care.

As an alliance, RDI works to ensure greater equity for all Persons Living with a Rare Disease and their loved ones across the globe.

RDI brings together national and regional rare disease patient organisations as well as international federations for specific diseases and multi-stakeholder groups.

VISION

A world where Persons Living with a Rare Disease and their families experience a better life through full recognition and support.

MISSION

A strong common voice for Persons Living with a Rare Disease and their families around the world.

OBJECTIVES

  • To ADVOCATE for rare diseases as an international policy priority
  • To REPRESENT Persons Living with a Rare Disease and their families at international institutions and platforms
  • To SUPPORT the empowerment of RDI members through knowledge exchange, networking, mutual support and joint actions