Your voice matters! Participate in our upcoming research by taking our family survey below. Your responses are completely anonymous, and we adhere to HIPAA standards to protect your privacy.
Join the Matrix platform and fill out the validated Surveys. Matrix, a technology platform that supports rare disease communities and is a crucial component that gathers information for patient registries and natural history studies. Make sure to select GABA-A Alliance when registering!
RESOURCES
GABA-A Alliance Parent Support Communities:
GABRA1: https://www.facebook.com/groups/192847388581752
GABRB1: https://www.facebook.com/groups/1117576368442995
GABRB2: https://www.facebook.com/groups/154303411788101
GABRB3: https://www.facebook.com/groups/2460533920883846
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Other Facebook groups can be found under "Gene Variants" at the top
of this page and clicking on the gene you are looking for.
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Do you know of another support community? Let us know!
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Health & Epilepsy:
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Ciitizen, a free service that helps patients get more out of their health records. Our platform enables patients to find better treatment options and allows them the opportunity to advance the research for cures: www.ciitizen.com
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Epilepsy Foundation’s Epilepsy & Seizures 24/7 Helpline: https://www.epilepsy.com/247-helpline
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CDC Seizure First Aid: https://www.cdc.gov/epilepsy/about/first-aid.htm
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CDC Managing Epilepsy: https://www.cdc.gov/epilepsy/managing-epilepsy/find-support.html
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Child Neurology Foundation Child Neurologist New Visit Toolkit: https://www.childneurologyfoundation.org/child-neurologist-new-visit-toolkit/
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Guidebook for Caregivers of Children With Rare and/or Serious Illnesses: https://www.caregiving.org/wp-content/uploads/2021/07/NAC_RareCaregivers_Guidebook_FINAL.pdf
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Science:
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Understanding Your Genetic Report- A resource from CACNA1A Foundation: www.youtube.com/watch?v=hyzGQ1fz3ZU&t=120s
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The GABA-A Receptors- www.youtube.com/watch?v=Tw0fc8Couuo
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Financial:
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Medicaid Disability Services and Waivers: http://www.medicaidwaiver.org/
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Childrens Medicaid Waiver Programs: https://www.kidswaivers.org/full-list/
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CMS State Medicaid Plans and Waivers: https://www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/info/state-medicaid-policies
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Social Security Administration (Booklet) Benefits for Children with Disabilities: https://www.ssa.gov/pubs/EN-05-10026.pdf
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Social Security Administration Supplemental Security Income: https://www.ssa.gov/ssi/
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My Gym Foundation- helps provide equipment and services for children in need: https://www.mygymfoundation.org/
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Make A Wish: https://wish.org/
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Santa’s Little Hackers- seasonal toy drive which adapts toys to make toys accessible to individuals with disabilities so they can play independently
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