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Sharing experiences, suggestions, and resources can help relieve some of the stress you may feel. Sometimes it just helps to connect with someone who wants to listen because they’ve “been there.”

 

Disease-specific organizations can provide information and facilitate support groups for families and individuals. 

 

Below are some national organizations that may be able to provide support and assistance related to either your child’s diagnosis or, more generally, to parents of children with special needs:

Support Groups

Making connections for support, understanding, and information

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  • Parent to Parent programs across the country provide emotional and informational support to families of children who have special needs.

  • Alzheimers Association reaches millions of people affected by Alzheimer’s and are are the world’s leading voluntary health organization in Alzheimer’s care, support and research.

  • United Cerebral Palsy (UCP) educates, advocates, and provides support services to ensure a life without limits for people with a spectrum of disabilities.

  • Autism Speaks has a wide array of resources and information for families affected by Autism Spectrum Disorders.

  • Parents of Special Needs Kids helps connect local parents of children with special needs, regardless of diagnosis, in their local area.

  • Muscular Dystrophy Association (MDA) is the nonprofit health agency dedicated to curing muscular dystrophy, ALS, and related diseases by funding worldwide research.

  • The Epilepsy Foundation helps individuals and families affected by epilepsy and related neurological impairments by providing education, advocacy, and services.

  • The National Down Syndrome Society is the national advocate for the value, acceptance, and inclusion of people with Down syndrome.

  • Families of SMA is an international support group and resource center for Spinal Muscular Atrophy.

  • Daily Strength offers a variety of online support groups.

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