Every PURA resource your family needs, in one calm place.
Verified therapists, AAC, equipment, respite, benefits and charities, plus plain-English research and events. Links checked every week.
- Every link checked weekly
- No ads, no tracking
- Information only, not medical advice
Just had a diagnosis?
Four steps for your first few weeks. Go at your own pace.
- Understand PURA syndromeGentle first steps and trusted sources
- Prepare for first appointmentsWhat to bring, what to ask
- Claim the support you're dueDLA, Carer's Allowance, grants and school support
- Find your peopleThe Foundation, registry and UK groups
- 101verified listings
- 9support categories
- 18practical guides
- Weeklylink and fact checks
Find the right help, fast
Every listing is checked against its own website and tagged by UK nation and PURA experience.
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.
8 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.
6 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.
13 listings →Benefits, grants & funding
Official benefits guidance and charities that offer grants for equipment and family needs.
21 listings →Charities & family support
UK charities for rare conditions, disability, epilepsy, siblings, carers and education (SEND).
19 listings →What's happening in PURA
Studies explained in plain English, with who can take part. Updated every Monday.
Studies and research
- PURA Syndrome Patient RegistryRegistryOpen
- PURA BiobankBiobankOpen
- PURA Syndrome Longitudinal Natural History Study (PURA Global Network)Observational studyCheck with study team
- DEER – Developmental and Epileptic Encephalopathy Research studyObservational studyRecruiting
- PURA Syndrome Disease Concept ModelCaregiver researchOpen
Coming up
- NowTO DEC
- 4DECAmerican Epilepsy Society Annual Meeting 2026Denver, Colorado, USA
- 28FEBRare Disease Day 2027Worldwide & UK events
- 30APR
Practical guides for UK families
Additional support for learning in Scotland: ASN, CSPs and your child's rights
Additional learning needs (ALN) in Wales: IDPs and your child's rights
Special educational needs (SEN) in Northern Ireland: statements and what’s changing
You are part of a worldwide PURA family
About 840 people worldwide are known to have PURA syndrome, and the number is growing as genetic testing improves. 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.
How every listing is checked
Our editorial policy is public. Nobody can pay for the PURA-experienced badge, and we never give medical advice.
Verified at source
Every fact comes from the organisation's own site or an official page, and the link is shown.
Re-checked weekly
Every link is re-tested each Monday, and each listing shows the date its details were last checked.
Independent & ad-free
Run by a PURA parent. No ads, no trackers, and any sponsor is always labelled.
Just had a diagnosis? Start with our free guide.
A calm, 16-page PDF you can read on your phone or print: what PURA means, your first 30 days, benefits and school support in all four UK nations, questions to ask, and a one-page checklist.
- Free, just your email
- Plus one short email a week
- Unsubscribe anytime
Free starter guide (PDF), plus one short email a week: new listings, guides, research and events. No health information collected. Unsubscribe anytime. Privacy.
