Be Part of Something Powerful: Join the Rare Community Network (RCNet)

Do you live with a rare disease, advocate for someone who does, or work in the field of rare disease research and care? The Rare Community Network (RCNet) is here for you. We are a growing, international network of individuals and organizations dedicated to improving the quality of life for those affected by rare conditions.

Why Join RCNet? Listen to our podcast review.

Being a member of RCNet connects you to a powerful community of like-minded individuals. Here are just a few of the benefits you’ll enjoy:

• Find Support and Share Knowledge: Connect with others who understand the unique challenges you face. Share experiences, learn from each other, and offer encouragement.
• Amplify Your Voice: RCNet provides a platform to raise awareness about your cause and advocate for change.
• Access Resources: Stay informed with the latest research, news, and resources relevant to the rare disease community.
• Collaboration is Key: Partner with other members on projects, initiatives, and advocacy efforts.
• Become a Leader: RCNet empowers its members to take an active role in shaping the future of rare disease care.

What Our Members Are Doing:

RCNet is a vibrant network of passionate individuals and organizations making a real difference:

• M4RD Student Voice Project: Our member, M4RD, is spearheading a student-led initiative to amplify the voices of young people living with rare diseases.
• Red Flags Paper Published: Congratulations to RCNet member Dr Lucy McKay on the recent publication of their groundbreaking paper on identifying red flags in rare disease diagnosis. Our own Dr Sondra Butterworth was also part of the research team.
• EDIRA Partners: Several RCNet members are proud partners of the EDIRA Partnership, working towards improving data collection and research for rare diseases.
• Rare Care Project: RCNet members are actively involved in the Rare Care project, a collaborative effort to enhance the quality of care for patients with rare conditions.

These are just a few examples of the incredible work our members are doing. By joining RCNet, you can become part of this impactful movement.

Join the Movement Today!

Becoming a member of RCNet is simple and free. Simply head over to our membership page and fill out the quick registration form. We look forward to welcoming you to our supportive and empowering community.

Ready to learn more? Explore these resources:

Together, we can make a significant difference in the lives of those affected by rare diseases. Join RCNet and be a part of the solution!

RCNet Members