Find us on the socials;
There are some very good Facebook groups if that's your thing, they are very supportive and the parents on there have seen everything;
Our links with international support groups
www.kabukisyndromefoundation.org - a great resource of information on Kabuki Syndrome.
www.sindromekabuki.it - Italian support group for people who have or know someone who has Kabuki Syndrome.
www.sakks.org - supporting Ausie kids with Kabuki Syndrome.
www.allthingskabuki.org - North American Kabuki Syndrome support.
Other useful organisations
www.sauk.org.uk - Started in 1981 SAUK remains the only national support group for children and adults with scoliosis in the UK.
www.kidney.org.uk - The NKF is the national Kidney Patient charity in the United Kingdom.
www.clapa.com - CLAPA is the representative organisation for all people with and affected by cleft lip and/or palate in the UK.
www.childrens-heart-fed.org.uk - The Children's Heart Federation are working to meet the needs of children and young people with congenital and acquired heart conditions and their families.
www.parentsofdisabledchildren.co.uk - The forum was created by parents who have children with special needs and is run by parents so we are all in this together. With us you will realise you are not alone.
www.macs.org.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.
www.newlifecharity.co.uk - 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.
www.cerebra.org.uk - 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.
www.familyfund.org.uk - 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.
www.disabilitysnowsport.org.uk - We work to make sure that anyone with a disability, may it be learning, sensory or physical, can ski or snowboard alongside other people.
www.stars.org.uk - The overall aim of the charity is to ensure that anyone presenting with unexplained loss of consciousness receives the correct diagnosis, the appropriate treatment, informed support and sign posting to the appropriate medical professional
www.notjusttalking.co.uk - Not Just Talking offers help with prevention through training for parents and professionals. We also provide training for professionals in assessing and delivering Not Just Talking’s unique and highly effective intervention to children 5-19 years of age.
Other syndromes which are similar to KS
www.chargesyndrome.org.uk - The CHARGE Family Support Group is the UK’s registered charity for people with CHARGE Syndrome and their families.
Toys - Special Equipment
www.fledglings.org.uk - Fledglings is a national charity that finds and sells products that improve the lives of disabled children and their families.
www.livingmadeeasy.org.uk - Clear, practical advice on daily living equipment.
www.nrs-uk.co.uk - Nottingham Rehab Supplies provide disability equipment, mobility equipment and aids that offer effective solutions to the challenges faced by the elderly and disabled people.
www.carebase.net - Carebase is committed to improving the environment for carers and patients.
www.joncare.co.uk - The Joncare range of paediatric products aims to meet the diverse and special needs of children with physical disabilities. Joncare offers both ‘own brand’ and selected high quality complimentary products through our brochure and online
www.delichon.co.uk - Delichon is one of the UK's top providers of customised seating and All-Terrain Buggies for children and adults with special needs.
www.disabledliving.co.uk/Kidz/Welcome - Three of the largest, FREE UK exhibitions totally dedicated to children with disabilities and special needs, their parents, carers and professionals who work with them.
www.assist-uk.org/Assist - UK leads a UK wide network of locally-situated Disabled Living Centres. Each centre includes a permanent exhibition of products and equipment that provide people with opportunities to see and try products and equipment and get information and advice from professional staff about what might suit them best of all.