There are several active groups of parents who are campaigning for better provision, or organising activities for themselves and their families, or otherwise supporting each other through sharing their experiences and knowledge. Listed below are some of the specialist support groups, their website links are on the right.
ABC Autism, Asperger’s syndrome and behaviour support group, who also represent parent carers on the Disabled Children's Strategy Implementation Group. Tel 0113 258 2615, 40 Newlaithes Road, Leeds LS18 4LG
ACT Children’s Palliative Care Information for families of terminally ill children, including bereavement. Helpline 0845 108 2201
Candlelighters for the families of children with cancer or serious haematological conditions. Tel 0113 247 0372, Children's Day Hospital, St. James's University Hospital, LS9 7TF
CBIT Child Brain Injury Trust support groups fund for children and young people, training, support and signposting, tel 0845 601 4939
Contact a Family for parents and self-help groups of parents of children with disabilities and rarer conditions. Tel 0808 808 3555, find local family worker
Cystic Fibrosis Regional Unit as well as treatment, this NHS service provide information, advice and support. Helpline 0845 859 1000, tel 0113 243 3144, St James Hospital, Beckett Street, LS9 7TF
Daisy Chain Support Group organise regular parent meets, plus provide information concerning individual healthcare, education and benefit advice, tel 0113 217 0104 between 10am until 3pm
Disabled Parents Network offer information, advice and peer support, tel 0300 3300 639
Epilepsy Action (British Epilepsy Association) provide advice and information about diagnosis, treatment, education, insurance etc, about children and epilepsy and associated rare syndromes, helpline 0808 800 5050, tel 0113 2108800, New Ansty House, Gateway Drive, Yeadon, LS19 2XY
LEAP Project the Listening Empowering Advocacy Participation Project carries out a range of disabled children community work and have a parent’s forum groups and consultations with parents/carers. Tel 0113 236 3900, Lower Ground Floor, Marrtree Business Centre, 533 Stanningley Road, LS13 4EN
Parent Partnership Service part of Education Leeds they offer advice for child with special educational needs. Tel 0113 395 1222, helpline 0113 395 1200, Mon to Fri 10am until 3pm
SNAPS group of parents of special needs children in Leeds who organise support and activities for themselves and for their children both separately and together. SNAPS also represent parent carers on the Disabled Children's Strategy Implementation Group. Tel 07964847775
Society for Deaf and Blind People advice, information, social work support and social services activities, including youth club and playscheme. Tel: 0113 243 8328, Centenary House, North Street, LS2 8JS
West Yorkshire AD/HD Family Support Group including talks and advice on attention deficit syndrome. Tel 01924 863212, Post Graduate Medical Centre, Pinderfields Hospital, Aberford Road, Wakefield, WF1 4DG
Young ADHDers Support Group email lea@yadhdpm.co.uk tel 0113 2340455
For other pages in this section, useful web addresses, leaflets and contacts please follow the links on the right.
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