Welcome to our Kabuki Syndrome Resources page—a place to find practical tools, useful downloads, and links to trusted UK organisations that support families affected by Kabuki syndrome. Whether you’re looking for information to share with your medical team, wanting to raise awareness in your local hospital, or seeking support for a related condition, this page brings everything together in one place.
Check back soon for a brand new Kabuki syndrome one page overview.
It would be wonderful if as many hospitals and medical centres as possible could display this poster. You never know if it could help the next person sitting in your reception area.
The Kabuki Syndrome UK Facebook Group is a friendly space for anyone in the UK affected by Kabuki syndrome to connect, share experiences, and support one another. Whether you're a parent, carer, or individual living with KS, you'll find a welcoming community here.
MRCC is a virtual centre based at the Manchester University NHS Foundation Trust (MFT) with partners across the region, the country and the globe. The MRCC aims to improve the lives of people with rare conditions, of all ages, by providing a platform for coordination of clinical care, research, education and engagement.
Unique’s mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single gene disorder associated with learning disability / developmental delay and to raise public awareness.
Enabling those with a Disability in the UK, Northern Ireland and Republic of Ireland to attend Events by providing IncLOOsion with our Changing Places.
Started in 1981 SAUK remains the only national support group for children and adults with scoliosis in the UK.
Contact: the charity for families with disabled children. Contact support families, bring families together and help families take action for others.
The Children’s Hyperinsulinism Charity is dedicated to supporting individuals and families affected by Congenital Hyperinsulinism (HI), a condition that is associated with Kabuki syndrome. Run by families with lived experience, the charity provides trusted information, practical support, advocacy, and opportunities for families to connect with others navigating life with HI.
Steps is the leading charity working for all those whose lives are affected by childhood lower limb conditions . Everything we do is about valuing and supporting individuals, families and carers affected by conditions which have an impact on the legs, hips or feet.
The NKF is the national Kidney Patient charity in the United Kingdom.
CLAPA is the representative organisation for all people with and affected by cleft lip and/or palate in the UK.
The home of information about Microphthalmia, Anophthalmia, Coloboma and related conditions. MACS offer support and information to parents and professionals in the UK and around the world. Macs also give parents, families and children the opportunity to meet each other, support each other and learn from each other.
Disabled children have been at the heart of the charity since 1991. Since that time we have become, through our work, the specialists for special children. Their needs and the needs of their families and carers, their health and their voices are all central to the work of the charity.
Cerebra is a unique charity set up to help improve the lives of children with brain related conditions through research, education and directly supporting the children and their carers.
We are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. We help ease the additional pressures families face. We can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together.
IPSEA are the leading charity in the field of SEND law in England, and we provide free and independent legal advice and support to families of children and young people with SEND.
The Hidden Disabilities Sunflower is a simple tool for you to share that you have a hidden disability voluntarily. Simply by wearing the Sunflower, you’re just letting everyone know that you might need extra help, understanding, or just more time.
Get your access requirements recognised at thousands of events, attractions, venues, and locations across the UK and beyond.
The CEA Card scheme is intended to benefit everyone who might face barriers that require someone’s assistance when visiting the cinema. The focus of the CEA Card Scheme is on removing, or at least minimising, some of the adverse effect of disabilities by providing for someone to accompany a disabled person.
The RDA are pioneers in the therapeutic use of horses, leaders in disability sport, and the only major UK charity focused specifically on the health and wellbeing benefits of bringing people and horses together.
We work to make sure that anyone with a disability, may it be learning, sensory or physical, can ski or snowboard alongside other people.
Kabuki UK is a volunteer-driven charity founded by parents of children with Kabuki syndrome. We provide support, advice, information, grants and community events to families across the UK. Our goal is to raise awareness of Kabuki syndrome, support research and provide a welcoming place for all those affected by Kabuki syndrome.
