Other Rare Resources
The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support.
Courageous Parents Network (CPN) is a nonprofit founded in 2014 by a bereaved family to share guidance and resources with others caring for a child with a serious medical condition.
Start Genetic is a movement dedicated to increasing awareness and understanding of genetic testing and genetic conditions.
Undiagnosed Diseases Network Foundation - A world where no family with an undiagnosed or ultra-rare condition has to fight alone for a diagnosis, research, treatment or support.
Librarey - a comprehensive database where rare disease and disability communities discover and share resources.
Rare Parenting - Evidence-based info and expert advice to parents of children with disabilities, rare diseases, and special needs.
The Center for Chronic Illness- Enhances well-being and reduces isolation for patients and caregivers, through support and education.
Uplifting Athletes creates meaningful connections between rare disease patients and athletic leaders.
Clinicaltrials.gov is a free online database where you can find information about clinical research studies happening around the world.
Mejo is a free, secure platform that helps families share essential medical information about their child with complex medical needs.
Undiagnosed Children Foundation is dedicated to supporting families navigating life after a diagnosis.
Genetic Support Foundation's mission is to ensure that everyone has the knowledge and support they need to navigate the rapidly evolving world of genetics