Every page, one place
Sitemap.
Everything on the PURA Family Directory at a glance: 147 pages in 8 sections, from the first steps after a diagnosis to every listing.
Start here6
Directory & topics11
- Directory of support for PURA families
- PURA syndrome: the organisations and specialists to know
- Finding physiotherapy, occupational therapy and speech therapy
- Communication and AAC: a gentle introduction
- Seating, mobility and everyday equipment
- Feeding and nutrition support
- Intensive therapy centres in the UK
- Respite, short breaks and children's hospices
- Benefits, grants and funding: where to start
- Charities and family support in the UK
- UK map of PURA family services
Guides & articles13
- Your first appointments after a PURA diagnosis: what to bring and what to ask
- Getting physiotherapy, OT and speech and language therapy for your child in the UK
- Choosing an AAC system for your child: a practical guide for families
- Your child's first wheelchair or seating assessment: what to expect and what to ask
- Feeding worries: who's who in your child's feeding team
- Thinking about an intensive therapy programme? 12 questions to ask first
- How to ask your council for short breaks (respite) and a carer's assessment
- Applying for DLA for a child with PURA syndrome: a practical guide
- Getting an EHC plan (EHCP) for your child: a step-by-step guide for families in England
- Reflux and constipation in children with PURA syndrome: questions to ask your GP
- Carer's Allowance and Carer's Credit explained for parents of a child with PURA syndrome
- Diagnosed later in life: PURA syndrome for teens and adults
- Practical guides for UK PURA families
Checklists & tools13
- Glossary: words PURA families hear, in plain English
- What to ask: First appointments after a PURA diagnosis (printable checklist)
- What to ask: Physio, OT and speech therapy (printable checklist)
- What to ask: AAC assessment (printable checklist)
- What to ask: Wheelchair and seating assessment (printable checklist)
- What to ask: Feeding team appointment (printable checklist)
- What to ask: Intensive therapy programme (printable checklist)
- What to ask: Short breaks and carer's assessment (printable checklist)
- What to ask: Claiming DLA and carer benefits (printable checklist)
- What to ask: EHCP and school or nursery meetings (printable checklist)
- What to ask: Moving to adult services (printable checklist)
- Printable “what to ask” checklists
- Care pack: a printable “All about me” passport
Research & events2
About & policies7
Every listing91
PURA groups & specialists 12
- Dr David Hunt – Wessex Clinical Genetics Service, University Hospital Southampton
- Fundacja PURA Polska
- Jack's Tomorrow
- NAPA Centre
- PURA Foundation Australia
- PURA Syndrome Deutschland e.V.
- PURA Syndrome Foundation
- PURA Syndrome Foundation Clinician Network
- PURA Syndrome Patient Registry
- Rive du Lac (ApexaQLA Suisse)
- Unique – PURA and 5q31.3 deletion syndrome family guide
- University of Southampton – PURA Global Network
Therapists 6
Communication & AAC 7
Equipment 11
Feeding 6
Intensive therapy 5
Respite & short breaks 12
Benefits & grants 16
- Blue Badge scheme – GOV.UK
- Carer Support Payment (Scotland)
- Carer's Allowance (Northern Ireland)
- Carer's Allowance – GOV.UK
- Carer's Credit – GOV.UK
- Caudwell Children
- Child Disability Payment – mygov.scot
- Disability Living Allowance (DLA) for children – GOV.UK
- Disability Living Allowance for children – nidirect
- Disabled Facilities Grants – GOV.UK
- Family Fund
- Help if you have a disabled child – GOV.UK
- Motability Scheme
- Turn2us
- Variety, the Children's Charity
- VAT relief for disabled people – GOV.UK
Family support 16
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