Made by a PURA parent in the UK. Information only, not medical advice. Read our disclaimer.

Charities & family support

Beyond PURA-specific groups, UK charities can help with information, epilepsy, education, sleep, siblings and caring.

Read next: Getting an EHC plan (EHCP) for your child: a step-by-step guide for families in England

Guide · last reviewed 1 November 2026 · information only, not medical advice

Rare and genetic conditions

Unique supports families with rare chromosome and gene disorders and publishes a PURA guide. SWAN UK supports families still waiting for a diagnosis. Contact is the UK charity for families with disabled children, whatever the condition.

Epilepsy, sleep and education

Many people with PURA syndrome have seizures. Epilepsy Action, Young Epilepsy and Epilepsy Society offer information and support. Your child's epilepsy care plan should always come from their own medical team. Cerebra's Sleep Advice Service helps with sleep. For school support and EHC plans in England, see IPSEA and GOV.UK SEND.

Looking after the whole family

Sibs supports brothers and sisters, and the PURA Syndrome Foundation runs sibling and grandparent outreach. Carers UK supports you as a carer.

Sources

16 listings

Carers UK

Advice, a helpline and guides for unpaid carers, including Carer's Allowance and a benefits calculator.

Charity · UK-wide · checked 2026-11-01

Cerebra

Charity for children with brain conditions and their families, including a sleep advice service.

Charity · UK-wide · checked 2026-11-01

Epilepsy Action

UK epilepsy charity offering information, support and training.

Charity · UK-wide · checked 2026-11-01

Epilepsy Society

UK epilepsy charity working through research, advocacy and care.

Charity · UK-wide · checked 2026-11-01

Genetic Alliance UK

An alliance of over 220 charities and support groups working to improve the lives of people with genetic conditions; runs Rare Disease UK.

Charity · UK-wide · checked 2026-11-01

IPSEA

Independent, legally based advice on special educational needs and disabilities, including EHC plans and SEND Tribunal appeals (England).

Charity · England · checked 2026-11-01

Mencap

Supports people with a learning disability and their families and carers.

Charity · UK-wide · checked 2026-11-01

Scope

The disability equality charity in England and Wales, with practical information and support.

Charity · England & Wales · checked 2026-11-01

SEND support and EHC plans – GOV.UK

Official overview of special educational needs support at school and how to request an education, health and care (EHC) plan in England.

Government guidance · England · checked 2026-11-01

Sense

National disability charity supporting people with complex disabilities and their families.

Charity · UK-wide · checked 2026-11-01

Sibs

The UK charity for brothers and sisters of disabled children and adults.

Charity · UK-wide · checked 2026-11-01

Special Needs Jungle

Parent-led site with news, resources and opinion about SEND, EHCPs and rare disease.

Parent-led publication · UK-wide · checked 2026-11-01

SWAN UK (Syndromes Without A Name)

Genetic Alliance UK's support community for families of children with undiagnosed genetic conditions – often a family's first community before a PURA diagnosis.

Charity · UK-wide · checked 2026-11-01

Young Epilepsy

Information, guidance and resources for children and young people with epilepsy and their families.

Charity · UK-wide · checked 2026-11-01

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Questions families ask

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Yes, please. Use the suggest a provider form. We verify every entry against the organisation's own website before listing it.

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