https://purasyndrome.app/New practical guides and plain-English PURA research news from the PURA Family Directory, a UK-first directory of verified support for PURA syndrome families.en-gbTue, 03 Nov 2026 21:16:26 +0000https://purasyndrome.app/c/support/additional-support-for-learning-scotland/https://purasyndrome.app/c/support/additional-support-for-learning-scotland/Tue, 03 Nov 2026 09:00:00 +0000Family supportHow additional support for learning works in Scotland, when a child with PURA syndrome may get a co-ordinated support plan (CSP), the timescales, and where to get free help.https://purasyndrome.app/c/support/additional-learning-needs-wales/https://purasyndrome.app/c/support/additional-learning-needs-wales/Tue, 03 Nov 2026 09:00:00 +0000Family supportHow the ALN system works in Wales for children with PURA syndrome: what an individual development plan (IDP) is, who writes it and how fast, and what to do if you disagree.https://purasyndrome.app/c/support/special-educational-needs-northern-ireland/https://purasyndrome.app/c/support/special-educational-needs-northern-ireland/Tue, 03 Nov 2026 09:00:00 +0000Family supportHow SEN support works in Northern Ireland for children with PURA syndrome: asking the EA for a statutory assessment, the 26-week timeline, statements, appeals and what the delayed new SEN framework will change.https://purasyndrome.app/c/pura/diagnosed-later-in-life-pura-syndrome-teens-and-adults/https://purasyndrome.app/c/pura/diagnosed-later-in-life-pura-syndrome-teens-and-adults/Tue, 03 Nov 2026 09:00:00 +0000PURA groups & specialistsA gentle UK guide for families who got a PURA syndrome diagnosis in the teenage or adult years: why it came late, what it can change now, and moving to adult services in England, Wales, Scotland and Northern Ireland.https://purasyndrome.app/guides/growing-up-14-to-25/https://purasyndrome.app/guides/growing-up-14-to-25/Tue, 03 Nov 2026 09:00:00 +0000GuideBenefits, decisions, education and adult services from 14 to 25 in England, Wales, Scotland and Northern Ireland.https://purasyndrome.app/c/feeding/reflux-and-constipation-questions-for-your-gp/https://purasyndrome.app/c/feeding/reflux-and-constipation-questions-for-your-gp/Mon, 02 Nov 2026 09:00:00 +0000FeedingReflux and constipation are frequently reported in PURA syndrome. A calm guide for UK families on what to note down, when to get help quickly, and what to ask your GP or paediatrician.https://purasyndrome.app/c/benefits/carers-allowance-and-carers-credit-explained/https://purasyndrome.app/c/benefits/carers-allowance-and-carers-credit-explained/Mon, 02 Nov 2026 09:00:00 +0000Benefits & grantsWho can get Carer's Allowance and Carer's Credit in the UK, how they link to your child's DLA or Child Disability Payment, and what's different in Scotland and Northern Ireland.https://purasyndrome.app/c/pura/first-appointments-after-a-pura-diagnosis/https://purasyndrome.app/c/pura/first-appointments-after-a-pura-diagnosis/Sun, 01 Nov 2026 09:00:00 +0000PURA groups & specialistsA gentle checklist for UK families heading into early appointments after a PURA syndrome diagnosis: what to bring, questions to ask, and how to share information with your child's team.https://purasyndrome.app/c/therapy/getting-nhs-physio-ot-and-speech-therapy/https://purasyndrome.app/c/therapy/getting-nhs-physio-ot-and-speech-therapy/Sun, 01 Nov 2026 09:00:00 +0000TherapistsHow UK families usually access children's physiotherapy, occupational therapy and speech and language therapy, how to check a private therapist, and how to get the most from sessions.https://purasyndrome.app/c/aac/choosing-an-aac-system/https://purasyndrome.app/c/aac/choosing-an-aac-system/Sun, 01 Nov 2026 09:00:00 +0000Communication & AACFrom signing and picture boards to eye-gaze devices: how AAC assessment works in the UK, what specialised NHS AAC hubs look for, and questions to ask before choosing a system.https://purasyndrome.app/c/equipment/first-wheelchair-and-seating-assessment/https://purasyndrome.app/c/equipment/first-wheelchair-and-seating-assessment/Sun, 01 Nov 2026 09:00:00 +0000EquipmentHow NHS wheelchair and posture services work for young children, what happens at an assessment, and practical questions to ask about buggies, seating and everyday life.https://purasyndrome.app/c/feeding/feeding-team-whos-who/https://purasyndrome.app/c/feeding/feeding-team-whos-who/Sun, 01 Nov 2026 09:00:00 +0000FeedingFeeding difficulties are common in PURA syndrome, especially in infancy. Here is who can help in the UK – speech and language therapists, dietitians, paediatricians – and the warning signs to report.https://purasyndrome.app/c/intensive/questions-to-ask-before-intensive-therapy/https://purasyndrome.app/c/intensive/questions-to-ask-before-intensive-therapy/Sun, 01 Nov 2026 09:00:00 +0000Intensive therapyA calm, practical checklist for UK families considering intensive or block therapy programmes for a child with PURA syndrome, covering qualifications, safety, costs and how it fits with NHS care.https://purasyndrome.app/c/respite/how-to-ask-your-council-for-short-breaks/https://purasyndrome.app/c/respite/how-to-ask-your-council-for-short-breaks/Sun, 01 Nov 2026 09:00:00 +0000Respite & short breaksA step-by-step guide for families in England: asking the children with disabilities team for a needs assessment and short breaks, getting a carer's assessment, and where else to find respite.https://purasyndrome.app/c/benefits/applying-for-dla-for-a-child-with-pura/https://purasyndrome.app/c/benefits/applying-for-dla-for-a-child-with-pura/Sun, 01 Nov 2026 09:00:00 +0000Benefits & grantsHow Disability Living Allowance for children works in England and Wales: who can claim, how to describe your child's needs, when payments start, and what to do if you disagree.https://purasyndrome.app/c/support/getting-an-ehcp-for-a-child-with-pura/https://purasyndrome.app/c/support/getting-an-ehcp-for-a-child-with-pura/Sun, 01 Nov 2026 09:00:00 +0000Family supportHow to request an education, health and care needs assessment, the legal timescales, what to include, and where to get free independent help. Written for families of children with PURA syndrome.https://purasyndrome.app/research/#psf-clinician-handouthttps://purasyndrome.app/research/#psf-clinician-handoutThu, 01 Oct 2026 09:00:00 +0000ResearchA five-page guide from the PURA Syndrome Foundation for any clinician caring for someone with PURA syndrome, in nine languages. Not a formal guideline – no consensus guidelines exist yet.https://purasyndrome.app/research/#5q31-duplications-2026https://purasyndrome.app/research/#5q31-duplications-2026Tue, 22 Sep 2026 09:00:00 +0000ResearchFrench researchers in the European Journal of Human Genetics described ten people with an extra copy of the region containing PURA (a duplication rather than a deletion or variant). All had developmental delay and mild to moderate intellectual disability. The authors suggest this is a new genomic disorder, milder than the deletion, and that having too much PURA protein, not just too little, can affect brain development. It does not change care for children with PURA syndrome today.https://purasyndrome.app/research/#jax-gene-therapy-safetyhttps://purasyndrome.app/research/#jax-gene-therapy-safetyTue, 12 May 2026 09:00:00 +0000ResearchJack's Tomorrow and The Jackson Laboratory presented work at ASGCT 2026 defining preliminary tolerated dose ranges for delivering a human PURA gene in healthy mice. This is early laboratory research, not a treatment available to families.