This page provides organizations for individuals affected by birth defects and their families categorized by region served.
Individual and Family Support Organizations:
- DiseaseInfoSearch is a helpful resource for finding support and/or advocacy groups for a specific disease in different parts of the world.
- DysNet is a global network that connects anyone who is personally or professionally affected by a congenital limb deficiency.
- The International Federation for Spina Bifida and Hydrocephalus provides resources for those across the globe living with Spina Bifida and Hydrocephalus as well as their families.
- RareConnect is a global platform for those with rare diseases to develop online communities and conversations across continents and languages.
- Unique is an international organization that provides support, information, and networking for families impacted by rare chromosomal and/or gene disorders.
- The Arc provides advocacy and support for individuals affected by intellectual and developmental disabilities, including some birth defects and congenital anomalies.
- Birth Defect Research for Children has support groups for parents in the U.S. categorized by birth defect.
- Family Voices is improving health care services and policies for all youth, especially those with special health care needs.
- Father’s Network provides information and resources for families to advocate for their children with special healthcare needs.
- Birth Defects Centre is an evidence-based advocacy and research organization for birth defects in India with specific information for parents and families.