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Top 3 Rare Disease Resources

01

National Organization for Rare Disorders

Founded by rare disease patient organizations with extensive information

02

National Institute of Health

The NIH offers a community resource page, including information about patient support organizations

03

Birth Injury Center

An advocacy center whose team includes birth-injury lawyers, healthcare providers who are well-practiced in birth injuries and prenatal complications, and family members of people with cerebral palsy and autism.

Suggested Reading

boy who could run.jpg

When my son was diagnosed with cerebral palsy, before we knew of his rare disease, I came across this book, The Boy Who Could Run But Not Walk, by Dr. Karen Pape. I had never heard of neuroplasticity before and this book not only dives into that topic but also provides hope for parents and caregivers of children with motor challenges.

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