Find all needed information about Retts Syndrome Support. Below you can see links where you can find everything you want to know about Retts Syndrome Support.
https://www.rettsyndrome.org/
Rett syndrome is an incredibly complex disorder that will require a multi-pronged approach to treat and cure. Our unwavering strategy focuses on treatment medications, gene therapy and neuro-habilitative therapies, and we are bringing the first and only treatment that addresses the underlying biology for Rett syndrome into the final phase of clinical testing.
https://www.rettsyndrome.org/for-families/
Rettsyndrome.org is an organization comprised of parents and friends of those diagnosed with Rett syndrome and is dedicated to providing you with the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome.
https://www.girlpower2cure.org/
Girl Power 2 Cure is a nonprofit organization leading a movement to end Rett Syndrome, a severe neurological disorder that primarily affects girls but does affect boys as well. Get Support
https://rarediseases.org/organizations/international-rett-syndrome-foundation/
The International Rett Syndrome Foundation engages in patient advocacy; promotes family and professional education; provides referrals to support groups, genetic counseling, and other services; and promotes legislation beneficial to affected individuals and families.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Rett-Syndrome-Fact-Sheet
Aug 13, 2019 · Supportive criteria are not required for a diagnosis of Rett syndrome but may occur in some individuals. In addition, these symptoms — which vary in severity from child to child — may not be observed in very young girls but may develop with age. A child with supportive criteria but none of the essential criteria does not have Rett syndrome.
https://www.rettuk.org/what-is-rett-syndrome/
Genetic but largely not in herited, Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives.
https://www.nhs.uk/conditions/Rett-syndrome/
If your child has Rett syndrome, your clinical team will pass information about them on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). This helps scientists look for better ways to treat and prevent the syndrome.
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