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Soft UK

SOFT UK provides non-judgemental information and support to parents after a prenatal diagnosis of trisomy 13 (Patau Syndrome) or trisomy 18 (Edwards' Syndrome) and beyond. Support is available for families who have recently received a worrying diagnosis, who are making decisions regarding their pregnancy, preparing for… Read more

0300 102 7638

Living made easy for children

Living made easy is an impartial advice and information website offers practical advice for parents, carers, and health professionals to assist children with daily living activities such as personal care and eating and drinking. Their website offers advice about clothing for children, communication, daily living, equipment… Read more

34Chatfield RoadWandsworthLondonSW11 3SE

Helpline : 0300 999 0004

Nystagmus Network

The Nystagmus Network provides a variety of services including distributing information about nystagmus, raising awareness of the condition, and supporting the research into a potential treatment. Contact via online form on website Read more

01427 718093

Dancing Eye Syndrome Support Trust

The Dancing Eye Syndrome Support Group is a registered charity with the principal aim of providing a link for parents of children with Dancing Eye Syndrome both locally and nationally. It also provides support and information to families of children with Dancing Eye Syndrome. Read more

ReadingBerkshireRG30 3QD

07746 129950

Batten Disease Family Association (BDFA)

The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and a cure. Read more

209-211 City RoadLondonEC1V 1JN

07876 682589

British Association for Music Therapy (BAMT)

The BAMT is a registered charity which acts as the professional body for music therapists and a source of information, support, and involvement for the public. Read more

2nd Floor, Claremont Building24-27 White Lion StreetLondonN1 9PD

020 7837 6100

SUDEP Action

SUDEP Action are a voluntary organisation dedicated to supporting families affected by Sudden Unexpected Death in Epilepsy and other epilepsy related deaths, together with promoting aware & research around SUDEP. Read more

Epilepsy Bereaved, 12aMill StreetWantageOxfordshireOX12 9AQ

Main Office : 01235 772850 Support line : 01235 772852

Childhood Eye Cancer Trust

The Childhood Eye Cancer Trust (CHECT) is a charity dedicated to helping babies, children and their families affected by retinoblastoma, a rare form of eye cancer. It provides support, raises awareness, and funds research. Read more

The Royal London HospitalWhitechapel RoadLondonE1 1BB

020 7377 5578

Erb's Palsy Group

The Erb’s Palsy Group is a registered charity offering advice, information and support to families affected by Erb’s Palsy. The Erb’s Palsy Group give support to parents, adults, and children, put parents in contact with each other and hold annual events for families. It also produces information… Read more

60Anchorway RoadCoventryCV3 6JJ

02476 413 293

Autistic Spectrum (AS) Support Group

A support group for parents of children with Autistic Spectrum Disorder. Meets regularly for mutual support and information. Read more

Carers Support SpelthorneSpelthorne Borough CouncilKnowle GreenStaines upon ThamesMiddlesexTW18 1XA

0303 040 1234 01483 302748
  • Updated: 27 Jun 2022

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