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Learn about DeSanto-Shinawi Syndrome, become part odf the community, support and promote research to treat DESSH.

Provides support and information to families affected by rare chromosome and gene disorders.

Provides a network of support to families with children affected by the rare seizure disorder infantile spasms, also known as West syndrome

Provide community services, public education, federal and local advocacy, seizure first aid training, and research funding into new treatments and therapies


  • Special: antidotes to the obsessions that come with a child’s disability by Melanie Dimmitt
  • Raising a Rare Girl: A Memoir by Heather Lanier
  • Day by Day: Emotional Wellbeing in Parents of Disabled Children by Joanna Griffin
  • Tender: The Imperfect Art of Caring by Penny Wincer
  • The Boy, the Mole, the Fox and the Horse by Charlie Mackesy
  • The Comfort Book by Matt Haig

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