Ajuda para famílias · Apoio
Instituições de caridade que podem ajudar famílias com doenças genéticas associadas ao gene CASK
Desde questões administrativas do dia-a-dia até apoio financeiro para a aquisição de equipamento, há muitas instituições de caridade que podem ajudar as nossas famílias.
Life admin
Scope →
A national disability charity providing telephone helpline support and template letters to help families access entitled assistance.
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.
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.