Click on a header for additional resources:
Learn about programs and organizations dedicated to helping individuals find a diagnosis.
Find an organization that provides free or deeply discounted flights for those traveling for Medical Assistance. There are several organizations that fly throughout the United States and some that cover the Eastern states. Many offer flights to both children and adults along with accompanying family and friends.
Rare Toolkits from Global Genes (Website)
Capitol Hill may seem like an enigma to some. Shrouded in mystery, its activities may seem elusive and arcane. How does it function? How can it benefit you? Many are not aware what an incredible resource Capitol Hill can be for the rare disease community.
Have you been searching for answers from many physicians and caregivers? And have you been feeling frustrated and confused with the lack of answers? Then this toolkit is for you.
The goal of this toolkit is to move you from feeling afraid and anxious to feeling prepared, confident and educated on how to manage the next steps in your healthcare journey.
This toolkit is designed to provide rare disease patients and their families an introduction to genetics and genetic testing. Advances in genetic testing are rapidly changing the way patients are being diagnosed and treated and providing new hope to patients with rare, genetic diseases.