affected by rare disease
sharing similar stories of courage
coming together as a community
to learn from one another.
Family Stories
Letters, Stories, Interviews, and Photo Gallery. We encourage families to connect and join us. Participate and share your family stories. Click here >>
Blog
Join our blog, hear from other parents and rare disease experts on topics that include; policy & advocacy, disease specific information, various therapies and treatments. We encourage your involvement and comments. Click here >>
Rare Disease
Community Forum
Ongoing discussions and dialogue by parents for parents; connect, share, learn. Click here >>
Join The Children’s Rare Disease Network on Facebook Today! Click here >>
Health Social Network
Register now and join our collaborative community of parents, physicians, researchers. Contribute, build specific or broad communities, and become empowered through this innovative communication platform. Powered by ILeonardo. Click here >>
SOLVE Program
Learn what to say, what to bring, what you need in your toolkit when visiting physician specialists. Learn from parents and help come to a diagnosis more quickly through this comprehensive program. Click here >>
Parent Advocacy Program
Calling all parents! We need you and want you to become involved in our advocacy program. There are many ways to become engaged. M.O.M. / D.A.D. and I CARE ABOUT R.A.R.E are coming to a town near you! Click here >>
Resources
Feeling overwhelmed? Resources provide you with a variety of tool kits, programs and links, helping you find relevant information more quickly. Click here >>
News
Hear what is happening within the rare disease community; biotech innovations, therapies, policy initiatives, clinical trials. Updated news and information daily. Click here >>
Rare Disease Database
We have provided links to the most robust rare disease databases. Search by disease, orphan drug and by symptoms. Helping you get the information more quickly. Click here >>
Charity Spotlight
Learn more about rare disease and the organizations that support them. Submit your charity information today! Click here >>
Video
Learn from parents, educators and industry. Personal stories and those that teach. Submit your video for inclusion today! Click here >>
