Resources For Parents and Caregivers
Receiving an ultra-rare diagnosis can place a family in an overwhelming world. We've gathered resources for newly diagnosed patients, their parents and/or caregivers.
Navigating the Healthcare System
01.
While many rare and ultra rare diseases with no FDA approved treatments do have open clinical trials. These treatments are experimental, they have been rigorously and scientifically assessed for the potential to improve disease symptoms.
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Helps collect and manage your child's medical information. Easily share it with current or future healthcare providers, researchers, as you see fit.
03.
Finding Support and Information When Your Child Receives a Rare Disease Diagnosis
Patient Advocacy Umbrella Organizations
01.
When you’re here, you’re part of a globally connected community committed to eliminating the challenges of rare disease. Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.
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We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
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Improving the health and well-being of people with rare diseases by driving advances in care, research, and policy.
Our Inspirations
We are especially grateful to these patient advocacy foundations. Generous with time, advice, and guidance, we follow in their footsteps.
