Finding support for your PURA child, all in one gentle place
A UK-first directory of verified therapists, equipment, communication (AAC), respite, benefits and charities, plus a plain-English tracker of PURA research and events. Built by a parent, for families.
You are part of a worldwide PURA family
Around 800 people worldwide have been diagnosed with PURA syndrome. The PURA Syndrome Foundation connects families, runs the annual conference and the PURA Patient Registry. Joining is free, and it is one of the most useful things a family can do for research.
Browse the directory
PURA organisations & specialists
Family foundations, the patient registry and clinicians or centres that publicly state experience with PURA syndrome.
12 listings →Physiotherapy, OT & speech therapy
How to find and check physiotherapists, occupational therapists and speech and language therapists in the UK.
6 listings →Communication & AAC
Charities, advice services and suppliers for augmentative and alternative communication.
7 listings →Seating, mobility & equipment
Postural support, mobility equipment and impartial equipment advice.
11 listings →Feeding & nutrition support
Finding dietitians, swallowing support and tube-feeding communities.
4 listings →Intensive therapy centres
UK centres offering intensive or block therapy programmes and Conductive Education.
5 listings →Respite, short breaks & hospices
Children's hospices, short-break support and charities that help the whole family.
12 listings →Benefits, grants & funding
Official benefits guidance and charities that offer grants for equipment and family needs.
14 listings →Charities & family support
UK charities for rare conditions, disability, epilepsy, siblings, carers and education (SEND).
16 listings →Research & studies tracker
Coming up
- 26 June 2026 – 31 December 2026
Together for PURA 2026 fundraising campaign - 4 December 2026 – 8 December 2026
American Epilepsy Society Annual Meeting 2026 - 28 February 2027
Rare Disease Day 2027 - 30 April 2027
Undiagnosed Children's Day 2027
Gentle monthly updates
A short monthly email: new listings, studies and events. No health information collected. Unsubscribe anytime. Privacy.
Every listing links to its source and shows when we last checked it. The ✓ PURA-experienced badge appears only where a provider publicly states PURA experience, with our evidence linked. Nobody can pay for it. How we verify.