Scope
A national disability charity providing telephone helpline support and template letters to help families access entitled assistance.
Help for families · Support
Charities that can help families with CASK gene disorders
From life admin to financial help with equipment, there are plenty of charities that can support our families.
Life admin
Mencap
A national charity for people with learning disabilities offering a helpline, service listings, and free seminars for families (e.g. how to ensure your child will be looked after financially in the future).
Contact
Freephone helpline, email and online contact form, plus their Listening Ear service for emotional support. Guidance on raising children with additional needs.
Disability Union
Works to build a truly inclusive world and protect and enhance the lives of disabled people across the United Kingdom.
Activities and play sessions
Sense
Supports families with complex needs by delivering programmes that allow people to be active through meaningful and engaging local activities.
Mental health support
The Sandcastle Trust
In partnership with Rareminds, offering free, confidential counselling for family members and individuals aged 18+ impacted by rare genetic conditions (6–12 sessions via Zoom or phone).
Financial help
Cerebra
Assists with holidays and therapy payments; offers a toy loan library, parental resource library, sleep advice and legal assistance.
Meru
Provides switch-adapted toys and free toy adaptations, plus a powered wheelchair loan programme called Bugzi.
Strong Bones
Financial, emotional and practical support for families of disabled children with bone conditions, including scoliosis support.
Whizz Kidz
The UK's leading charity supporting young wheelchair users up to 25 years old, offering equipment and skills training.
Family Fund
Grants for families of disabled children to purchase specialist equipment (low-income families only).
Just4Children
A fundraising platform enabling Gift Aid collection while promoting family fundraisers.
The Elifar Foundation
Provides grants for items including wheelchairs, seating, communication devices, and sensory equipment for children with severe learning difficulties.
Respite
Dreams Come True
A national charity enabling children and young adults with serious or life-limiting conditions to have their dreams come true.
The Sandcastle Trust
Bespoke family respite opportunities — UK breaks, attraction passes, or special day trips for families with rare genetic conditions.
Make a Wish Foundation
Grants wishes for children with serious illnesses; several CASK families have visited Disney World through this foundation.
Camp Jojo
A totally accessible camping holiday experience for families of children with complex needs and disabilities.
Strong Bones
Provides funding for certain respite holidays.
Merlin's Magic Wand
Single day visits to local Merlin attractions for eligible children.
HCPT Pilgrimage Trust
Every Easter offers a life-changing pilgrimage holiday in Lourdes in the south of France for disabled and disadvantaged children aged 8–18, supported by volunteers and nurses.
Medical support
UKIST
The UK Infantile Spasms Trust provides community support and family events for families with infantile spasms.
ERIC
The national charity dedicated to improving children's bowel and bladder health, offering helpline and online advice for constipation management.
Strong Bones
Support and guidance for bone conditions including scoliosis.