SLC6A1 Support

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Private SLC6A1 Support Group

 

Financial and Estate Planning for Children With Disabilities – https://www.moneygeek.com/financial-planning/resources-for-parents-of-children-with-special-needs/ 

Travel Guide for Parents of Children with Disabilities – https://www.moneygeek.com/insurance/auto/resources/driving-a-child-with-special-needs/

Support for Families with Children Diagnosed with Chronic or Terminal Illness – https://www.moneygeek.com/financial-planning/childhood-chronic-terminal-illness/


Rare Disease Support

Global Genes
Global Genes
National Organization of Rare Disease

Join the Rare Disease Educational Support Program. The Rare Disease Education Support Program is designed to offer rare disease patients and/or their families/caregivers an opportunity to participate in educational programs and conferences that offer rare disease content. NORD’s program provides financial support for registration costs (and once conferences are no longer solely virtual, the program will also provide limited assistance with associated travel and lodging costs for conference participation). 


Epilepsy Support

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Doose Facebook Group
Epilepsy Foundation
Child Neurology Foundation (CNF) Family and Empowerment Program

The Program offers families a free, direct connection with a peer support specialist.  Peer support specialists are parents, too.  They are trained to listen to you along this emotional journey without judgment and will share trusted information and helpful resources.

Doose Syndrome Epilepsy Alliance