Do you live with a rare disease, support someone who does, or work in rare disease research, advocacy, or care? The Rare Community Network (RCNet) is here for you.

RCNet is a growing international network of individuals and organisations committed to improving the lives of people affected by rare conditions. By joining, you become part of a supportive community that values connection, collaboration, and action.

Why Join RCNet?

As a member, you can:

• Connect with others who understand the challenges of rare disease

• Share knowledge and experiences in a supportive community

• Access useful resources including research, news, and updates

• Raise awareness and strengthen advocacy efforts

• Collaborate on projects and initiatives that make a real difference

Our Members in Action

RCNet members are already making an impact.

• M4RD is leading the Student Voice Project to amplify the voices of young people living with rare diseases.

• Dr Lucy McKay recently published a groundbreaking paper on red flags in rare disease diagnosis, with Dr Sondra Butterworth also part of the research team.

• Several members are involved in the EDIRA Partnership to improve rare disease data and research.

• Members are also contributing to the Rare Care Project to enhance quality of care for patients with rare conditions.

Join Today

By joining RCNet, you can become part of this growing and impactful movement.

Sign up here:  RCNet Membership Form 

Join us today and help shape a stronger future for the rare disease community.

Our members can be found here