Support for Patients and Families

Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives. Others are searching for medical information, treatment options, the latest research, or financial aid resources. This guide will help you learn more about the different types of information and services offered by nonprofit support and advocacy groups.

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General: support registry clinical trials disease registry advocacy support groups Genetic Disorders non-profit/community and advocacy organizations rare diseases Rare disorders Genetic Disease Patient Advocacy family support

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