Directory of European Resources > Patient Support Groups > United Kingdom

Cleft Lip and Palate Association (CLAPA):

www.clapa.com

CLAPA works in partnership with parents and health professionals. CLAPA offers support to parents of babies born with clefts by providing verbal and written information, a mail-order service for specialised bottles and teats, and a parent-to-parent support network represented by over 40 local branches across the UK. CLAPA also supports health professionals involved in cleft care by providing information and offering training events through the year in connection with local health authorities. Last year CLAPA produced a comprehensive information pack which was distributed among every maternity unit in the UK. CLAPA's website has a chat page for teenagers born with clefts, produces a magazine and runs summer camps for the same age group.

More information about CLAPA...

Changing Faces (UK):

www.changingfaces.co.uk/

Changing Faces' primary focus is on disfigurements affecting the face. Changing Faces UK provides confidential support and information for anyone who has a visible disfigurement, their families or friends. The focus is predominantly on managing the emotional and social consequences of living with a distinctive appearance. The organisation offers various services for different groups:

For patients and their families Changing Faces provide:

• individual support: face-to-face, on the phone or by letter
• workshops and group activities
• contact with others with similar activities
• support for children experiencing difficulties at school
• self-hlep booklets and videos on coping strategies and similar conditions
• advice about employment concerns
• help with decision making about medical and surgical treatment

For health or social care professionals Changing Faces provide:

• training courses and study days
• support, information and advice from an outreach team
• advice on developing new models of health care
• training manuals and self-help guides

Headlines, The Craniofacial Support Group:

 www.headlines.org.uk

Provides information and support on all conditions associated with craniosynostosis including:

• Apert Syndrome: www.headlines.org.uk/Aperts.htm
• Crouzon Syndrome: www.headlines.org.uk/Crouzon.htm
• Pfeiffer Syndrome: www.headlines.org.uk/Pfeiffers.htm
• Saethre-Chotzen Syndrome: www.headlines.org.uk/Saethre.htm
• Single Suture Craniosynostosis: www.headlines.org.uk/SingleSuture.htm

Useful names and addresses for related organisations:

Aid for Children with Tracheotomies (ACT)
9 Elmdale Crescent, North Field, Birmingham, England, B31 1SL
Tel: +44 121 411 1348
Support Group for Parents offering information and advice.

Contact a Family (CaF): www.cafamily.org.uk
170 Tottenham Court Road, London, England, W1P 0HA
Contact a family is dedicated to helping families who care for children with any disability or special need.CAF can help:

• By providing information about children's disabilities and special needs to both parents and professional workers;
• By putting families in touch with other families;
• By assisting parents to develop their own local or national support groups;
• By providing a voice to raise awareness and campaign for families;
• By providing information about services both local and national to families and professional workers.