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Genetic Disorders
About Genetic disorders Self-help Support National Information Local Information Useful Websites
The following pages provide links to information on Genetic Disorders. These are rated as good quality.
NHS Website - provides information on various genetic disorders
British Society for Paediatric Endocrinology and Diabetes - provides patient information written by a specialist doctor on different Genetic Disorders.
Patient UK – Information leaflets on different genetic disorders.
Self-help Support: The following sites provide links to various self-help support groups for genetic disorders.
Patient Uk - self- help support groups
Genetic Alliance UK - Provide support group information on various genetic disorders.
Around Hounslow & Isleworth
Down's
Syndrome London: Contact: 6 Cranbourne Road, Muswell Hill, London N10
2BT. Tel: 020 8815 0070. New parents support group in Twickenham, West London.
Tel: 0208 883 8638 email: info@downs-syndrome-london.org.uk
Hounslow Thalassaemia and Sickle Cell Support Group (TASC): Advice, advocacy, information and raising public awareness as well as social events and peer support.
Contact: Whitton Health centre, Percy road, Hounslow TW3 6JL. Tel: 0203 771 6092.
N W Thames Regional Genetics Service: Covers Hertfordshire, Bedfordshire, Barnet, Hillingdon, Brent & Harrow, Ealing, Hammersmith, Hounslow, Kensington, Chelsea, Westminster, Edgware, Kennedy Galton Centre, Level 8V Northwick Park & St Marks NHS Trust, Watford Road HARROW, Middlesex HA1 3UJ .Tel: 020 8869 2795
London
Adrenoleukodystrophy Family Support, 4 Morley House, 320 Regent Street, London W1B 3BB Tel: 020 7631 3336 Email: info@aldfst.org.uk
Contact a Family (CaF) :Contact a Family is a UK-wide umbrella charity providing advice, information and support to the parents of all disabled children including rare disorders, including assessments, benefits and special educational needs - no matter what their health condition. Contact: Wenlock Studios, 50-52 Wharf Road, London N1 7EU TEL: 020 7608 8700 email: info@contact.org.uk
Genetic Alliance UK : promote awareness and understanding of genetic disorders so that high quality services for people affected by genetic conditions are developed and made available to all who need them.
Contact: Genetic Interest Group, Unit 4D, Leroy House, 436 Essex Road, London. N1 3QP
Haemophilia Society: Represents the interests of people with haemophilia or related bleeding disorders and their families, providing information about education, employment, benefits and help.
Contact: Petersham House, 57a Hatton Garden, London, EC1N 8JG. Tel: 020 7831 1020.email: 020 7405 4824.
Huntington's Disease Association, 3rd Floor, Down Stream Building, 1 London Bridge, London SE1 9BG Tel: 020 7022 1950. Email: info@hda.org.uk. London North contact: Delia Balan. Tel :020 83665179
Larsen's Syndrome Support Group: 7 Littleworth Lane, Esher, Surrey Tel: 01372 467061.
Medical Advisory Service - Men's Health Helpline: Enquiries related to male health: genetic disorders; prostate problems; genito-urinary; cancers; cardiac; STD's; menopause; sports injuries; impotence; etc.
Contact: PO Box 3087, London, W4 4ZP. Tel 020 8995 4448 (Helpline) /020 8995 9503 (Admin)
N E Thames Regional Genetics Service Mothercare Unit of Clinical Genetics & Fetal Medicine :The Clinical Genetics unit provides genetic counselling for children and adults who have or who may be at risk of inheriting a genetic condition. In addition, it runs specialist clinics for multiple malformation and dysmorphic syndromes, and for conditions where genetic testing can be used for carrier detection or prenatal diagnosis.
Contact: Institute of Child Health, 30 Guildford Street, LONDON, WC1N 1EH Tel: 0207 905 2647.
Duchenne
Family Support Group : Contact: 78 York Street,London WIH IDP.
Helpline: 0800 121 4518. email:
info@dfsg.org.uk
Other Local information can be found at London Borough of Hounslow
See also Pregnancy and Birth
Rare Chromosome Disorder Support Group
Please let us know
if links are not working or to add any other local support group information