87 verified listings across 9 categories. Filter by topic, nation or PURA experience.
The global family foundation for PURA syndrome: family support, ambassadors, sibling and grandparent outreach, the annual PURA conference and the global patient registry. Registered as a US 501(c)(3) and active with UK families.
Free global registry run by the PURA Syndrome Foundation with COMBINEDBrain and Matrix. Families enter information once and it helps build the natural history of PURA syndrome and prepare for future trials. Available in eight languages.
The Foundation's directory of clinicians with PURA experience (genetics, neurology, epilepsy, paediatrics), mostly in the USA with some in Europe, including Southampton.
NHS consultant clinical geneticist whose listed clinical interests include PURA syndrome. Co-author of early PURA research and a member of the PURA Syndrome Foundation's Scientific Advisory Board. NHS referral is usually via your child's doctor.
The research group (led by Professor Diana Baralle) behind the first description of PURA syndrome in 2014 and the UK-sponsored PURA Syndrome Longitudinal Natural History Study.
A free, plain-language family guide to PURA syndrome and 5q31.3 deletions from Unique, the UK rare chromosome and gene disorder charity.
US non-profit focused on funding research towards a treatment for PURA syndrome, including gene therapy work with The Jackson Laboratory.
Australian charity supporting PURA families in Australia and New Zealand; runs the international DEER epilepsy study.
German-language family association supporting affected families, family meetings and research.
Polish foundation supporting children and families with PURA syndrome; running a Polish natural history study.
Family-centred therapy centre in Zug, Switzerland, which states that more than ten children with PURA syndrome are part of its cohort. Presented at the 2026 PURA conference. Listed for information only – we have not assessed its methods or outcomes.
Paediatric intensive therapy provider (Australia and USA) that publishes a PURA syndrome information page and took part in a therapy session at the 2021 PURA conference. Listed for information only.
The UK professional body for speech and language therapists, covering communication and swallowing needs. Explains what speech and language therapy is and how to access it.
Not-for-profit association with a searchable directory of independent (private) speech and language therapists across the UK.
Professional network of children's physiotherapists, with resources and useful links for parents and carers.
Directory for finding an occupational therapist, with tips on choosing one suited to your needs.
Check that a physiotherapist, occupational therapist, speech and language therapist or dietitian is registered with the Health and Care Professions Council before you book privately.
UK charity offering riding and carriage-driving activities for disabled children and adults through local groups.
UK charity for augmentative and alternative communication (AAC), with clear explanations of aided and unaided AAC.
Charity specialising in AAC and assistive technology, with a free advice line (0800 080 3115, as listed on its website).
Supplier of AAC devices, communication apps and eye-gaze trackers controlled by eye gaze, touch or switch.
UK assistive technology company behind the Grid AAC software and communication devices.
UK supplier of AAC solutions focused on language development, established in 1991.
Supplier of assistive technology for special needs – AAC devices, switches, sensory tools and switch-adapted toys.
Makaton uses symbols, signs and speech together to support communication; the charity offers resources and training for families.
Postural support equipment for children – seating, standing, bathing and sleep – designed and manufactured in Northern Ireland.
Family-friendly adaptive equipment for children with additional needs, aimed at everyday participation.
Manual and powered wheelchairs, wheelchair seating and mobility aids.
UK supplier of mobility equipment including gait trainers, standers, adaptive trikes and the Frame Runner.
Assistive devices and patient-handling equipment; R82 children's products are now part of Etac.
Orthoses, wheelchairs and other mobility products.
Designs and manufactures special needs trikes and disability bikes tailored to the rider.
The UK charity for young wheelchair users, helping with equipment, skills and confidence.
Charity helping disabled children and their families with equipment, play and support from its nurse helpline.
Impartial advice and information about daily living and disability equipment.
Charity providing impartial information and advice about products, equipment and services for disabled people.
Search the BDA's freelance directory for a registered dietitian, including those who specialise in particular conditions.
Patient-led charity offering friendship, support and advocacy for people on home artificial nutrition, including tube feeding.
Charity supporting families using ketogenic dietary therapies for epilepsy – recipes, information and events. These diets must only be used under the supervision of your child's medical team.
Speech and language therapists also assess and support eating, drinking and swallowing. The RCSLT explains the role and how to access therapy.
Intensive physical therapy programme in Oxfordshire for babies and children with neurological and genetic conditions, combining mat work and 'Spider' suspension therapy. Footsteps Foundation can help families who cannot afford the programme.
Welsh centre (formerly Bobath Children's Therapy Centre Wales) offering physiotherapy, occupational therapy and speech and language therapy for children with cerebral palsy and allied neurological conditions.
Birmingham charity providing Conductive Education for children and adults with neurological motor disorders; self-referral accepted (per the NHS service directory).
Supports children, adults and families living with cerebral palsy and neurological movement conditions through Conductive Education.
Charity offering specialist therapy programmes designed by qualified therapists and taught to families to carry out at home.
UK-wide charity for children living with serious illness and the services that support them, including children's hospices.
Children's hospice charity in Dorset and Wiltshire offering care at home, in the community and at its hospices. It has published a PURA family's story describing its support.
Children's hospice in Oxford.
Supports babies, children and young people with life-limiting conditions and their families.
Helps families caring for seriously ill children. Check the website for the areas it covers.
Hospice care for children with serious or life-limiting conditions. Check the website for the areas it covers.
Hospice in Winchester providing care for seriously ill babies, children and young adults.
Children's hospice charity in Scotland.
Emotional and practical support for families who have a child with a life-threatening or terminal illness.
National charity helping seriously ill children and young people thrive at home.
Government guidance on how local authorities in England should provide short breaks for carers of disabled children – useful when asking your council what is available.
Charity supporting unpaid carers, working through local carer services.
Grants for families on a low income raising a disabled or seriously ill child, for things they need most.
May help with the extra costs of looking after a disabled child under 16 (England and Wales). Official eligibility and how to claim.
Scotland's replacement for child DLA: rates, who should apply and how to apply.
Official DLA information for families in Northern Ireland.
Official information on Carer's Allowance for people caring for someone with substantial needs.
Helps carers protect their National Insurance record.
Overview of rights and support: childcare, car costs, home adaptations and education.
Information about the Blue Badge parking scheme and applying through your council.
Council grants towards home adaptations for a disabled person.
Use an eligible mobility allowance to lease a car, wheelchair-accessible vehicle, scooter or powered wheelchair.
Some disability equipment can be bought without VAT. Official rules.
Charity helping people access benefits and charitable grants, including a grants search and benefits calculator.
Practical and emotional support for disabled and neurodivergent children and their families, including equipment.
Funds and delivers programmes for children and young people across the UK, including equipment grants.
UK charity giving families information and advice on benefits, education, health and social care.
UK charity supporting families affected by rare chromosome and gene disorders; publishes the PURA family guide.
Genetic Alliance UK's support community for families of children with undiagnosed genetic conditions – often a family's first community before a PURA diagnosis.
An alliance of over 220 charities and support groups working to improve the lives of people with genetic conditions; runs Rare Disease UK.
The disability equality charity in England and Wales, with practical information and support.
Supports people with a learning disability and their families and carers.
National disability charity supporting people with complex disabilities and their families.
UK epilepsy charity offering information, support and training.
Information, guidance and resources for children and young people with epilepsy and their families.
UK epilepsy charity working through research, advocacy and care.
Charity for children with brain conditions and their families, including a sleep advice service.
Advice, a helpline and guides for unpaid carers, including Carer's Allowance and a benefits calculator.
The UK charity for brothers and sisters of disabled children and adults.
Independent, legally based advice on special educational needs and disabilities, including EHC plans and SEND Tribunal appeals (England).
Official overview of special educational needs support at school and how to request an education, health and care (EHC) plan in England.
Parent-led site with news, resources and opinion about SEND, EHCPs and rare disease.
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