An Advocacy Support Worker will provide one-to-one specialist support to families across the UK affected by Rett Syndrome, helping them navigate health, education and social care, access benefits, and receive compassionate guidance during crisis or bereavement, so families feel informed, not alone.
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Beneficiaries
Families caring for someone with Rett Syndrome must navigate complex and fragmented health, education and social care systems, often during periods of crisis. Many feel unheard, overwhelmed and unsure what support they are entitled to or how to access it. Without specialist, Rett-informed advocacy, families struggle to secure appropriate care, benefits or education, increasing stress, isolation and the risk of poor outcomes for both the child and their family.
Reverse Rett will deliver specialist, one-to-one advocacy through a dedicated Advocacy Support Worker, standing alongside families at critical points. Families will receive tailored, Rett-informed support to navigate health, education and social care systems, access benefits and funding, and receive compassionate guidance during diagnosis, crisis or bereavement, ensuring they feel heard, confident and not left to face Rett alone.
