Rare conditions affect over 3.5 million people in the UK, yet families often feel invisible and isolated, with limited access to peer support or services that understand their unique challenges. 75% of rare diseases affect children, and many families face exhausting battles for diagnosis, coordinated care, and practical support. Without connection to others in the same situation, the emotional toll can be devastating.

Through our Community Pillar, we create inclusive spaces and activities where families can meet, build friendships, and share experiences. Our community programme offers regular adapted activities, social events, and wellbeing support. We also ensure patient voices are heard by involving families in co-designing practical tools (like the Rare Patient Passport and Rare Disease Research Network) and shaping solutions that address real-life challenges.