Find resources in all 50 states
for advocacy, recreation, assistive technology, education, health,
and more! Click here >>
Our Partner, A-T Children's Project has compiled a list of resources, general information and guidelines that we hope you find useful. You will see this area of the site evolve as we are made aware of new resources and information relevant to you. If you have any questions, suggestions, additions or comments, please email info@rareproject.org.
SNiPs, a blog written by the supporters of the Children's R.A.R.E. Disease Network.
Our Purpose: When a child is diagnosed with a rare disease (or has yet to be diagnosed), The Project's mission is to create a one-stop resource center to help empower parents to find all the information, resources, and support they need. Check it out >>
Take Action – be the catalyst to help SOLVE your child’s medical diagnosis
SOLVE IT! The SOLVE program provides tools for parents currently searching to help diagnose their child.
Click here for our toolkit.
![]()
Introducing the R.A.R.E. Social Network. The first of it’s kind social network for the children with rare disease community.
![]()
We ask that you take a few minutes to register for this service. The information gathered will provide you an opportunity to connect with other rare disease families within your various shared communities; by city, state, disease, symptoms, etc.
![]()
Join our M.O.M. or D.A.D. team!
We want MOMS ON a MISSION and DADS AGAINST DISEASE to contact us.
Children's R.A.R.E. Disease Network is looking to build a parent advocacy program that engages parents affected by rare disease and helps build programs that create action and help make an impact immediately. Find out more >>
![]()
Search for Rare Disease Information within one of these comprehensive sites.
Children's R.A.R.E. Disease Network is providing you introductions to resources that we believe are the most viable, the most robust and have the greatest depth of information. Please click through these links and follow the directions to uncover relevant information related to rare disease.





