Our Ambition
Our ambition is simple and bold: to make authentic, inclusive engagement the norm — not the exception. Through RCNet, we connect people who are doing the work, so that trust-led approaches spread faster, partnerships form more easily, and communities are involved early, ethically, and meaningfully.
Join RCNet (free membership) if you’re an advocate or organisation ready to collaborate, share opportunities, and strengthen rare disease engagement — together.
RCNet Members Websites and Profiles
New RCNet Members
Our Members
RCNet (Rare Community Network) brings together 50 members — a powerful mix of individual advocates, lived experience leaders, and charities/third sector organisations working across rare disease and health equity. Our members range from grassroots community voices to established organisations, creating a space where people can share learning, strengthen practice, and amplify what matters most to communities.
Social media reach 2026
Together, RCNet members bring significant visibility and influence. Our combined social reach across member networks is LinkedIn: 777,947 | Facebook: 592,467 | Instagram: 237,431. That reach matters because it helps trusted messages travel further — improving awareness, increasing participation in opportunities, and ensuring community priorities are heard by the people shaping research, services, and policy.