Communities, advocacy groups, and support organizations for Amaurosis-hypertrichosis syndrome.
Community groups consist of other patients and families of patients with rare diseases that offer support and information on what to expect when dealing with the disease. They offer help in all different aspects of how a rare disease can affect the daily routine of the family, from where to get special supplies to what the latest treatment is for a given condition. Community groups offers hope and emotional support when needed.
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Here are some patient advocacy organizations that support anyone in the rare diseases community.
|Genetic and Rare Diseases Information Center||Official NIH center for patient support|
|RareConnect||Social networking platform to connect with others affected by a rare disease|
|Global Genes||Patient advocacy group for anyone in the rare disease community|
|Caregiver Action Network||Community and information for caregivers|