Support for Individuals and Families

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.
    • Global ARCH has a helpful map that connects patients and families impacted by congenital heart disease to local resources for support.
    • 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.



    • EURODIS is a patient-driven alliance that provides an online community for rare diseases across Europe.
    • Shine is a U.K based organization that provides specialist support throughout infancy for those living with Spina Bifida and/or Hydrocephalus as well as their parents, families, and caretakers.

North America

    • 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.

Southeast Asia

    • Birth Defects Centre is an evidence-based advocacy and research organization for birth defects in India with specific information for parents and families.