RCNet membership connects you to a compassionate and inclusive community where individuals and families affected by rare diseases support each other, especially when resources are limited. Our Rare Community Network is dedicated to providing rare disease inclusive support, empowering members to share experiences, collaborate, and advocate for health equity.
By joining RCNet, you become part of a network where your voice matters, your challenges are understood, and together we drive positive change for the rare disease community. Experience the power of community-driven collaboration and inclusive support. Become an RCNet Member today and help us build a stronger, more equitable future for all.
Rare Community Network
BECOME A MEMBERS TODAY A problem shared is a problem halved.
Why join our RCNet?
Member Benefits
Welcoming Community: Join a supportive network where rare disease patient groups, advocates, students, and ethnic minority communities come together to share experiences, build connections, and find inclusive support.
Collaborative Opportunities: Work alongside diverse members to address shared challenges, develop innovative solutions, and amplify the patient voice in rare disease advocacy.
Co-Creation for Impact: Engage in co-creation activities that empower all members to contribute ideas and expertise, leading to meaningful, evidence-based outcomes and positive change.
Free Membership: Access all RCNet benefits at no cost if you are a small charity, advocate, or student, ensuring support is accessible to those who need it most.
Peer Networking: Connect with individuals and organisations who understand the unique journey of living with or supporting someone with a rare disease.
Exclusive Resources: Benefit from tailored guidance, toolkits, and the latest information on inclusive research, health equity, and community-led initiatives.
Events & Training: Participate in events, workshops, and training sessions designed to build skills and foster collaboration across the rare disease community.
Amplified Patient Voice: Be part of a movement that champions the perspectives of underrepresented and seldom-heard groups, influencing policy and practice at every level.
Quotation following the EDIRA Building Trust Symposium
About RCNet: The Rare Community Network
With the launch of the new 10-year NHS plan and the growing recognition of the patient voice, it is more important than ever for small charities to unite and collaborate. As Health Secretary Wes Streeting has emphasised, “patients must be partners in their own care,” making collective advocacy essential for progress in rare diseases (NHS England – Our NHS, Our Future).
RCNet offers a supportive and inclusive environment where your charity’s contributions are valued and celebrated. By joining our community, you will connect with individuals, families, caregivers, and advocates all dedicated to advancing health equity, diversity, and inclusion for people affected by rare diseases.
Whether you are looking to develop new skills, share innovative ideas, or address unique challenges, RCNet provides a trusted platform for growth, networking, and collaboration. Here, you can exchange knowledge, find peer support, and work together to raise awareness and drive positive change.
Advantages of RCNet Membership
We are stronger together
Collective Influence: Amplify your impact on policy and service design through a united voice.
Collaboration Opportunities: Connect with like-minded organisations, researchers, and advocates.
Knowledge Exchange: Share experiences, best practices, and innovative approaches.
Supportive Community: Enjoy encouragement, peer support, and joint advocacy.
Together, we can strengthen the collective patient and charity voice, drive innovation, and improve quality of life for everyone affected by rare diseases.
