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Useful organisations

This section of DLF Data contains details of numerous voluntary organisations, Government agencies, support groups and other contacts that may be useful to older and disabled people and their carers. If you find any information that is incorrect please email Data Services to let us know which 'Contact' is incorrect and what information needs changing. If you would like to be added to the database please complete these questions.

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Genetic Disorders

Works to raise professional and public understanding of genetic disorder; to improve services for people with genetic disorders; to bring client views to policy and ethical debates on issues concerning human genetics. Gives information on support groups and genetic services.

Address:

  • Unit 4D Leroy House
  • 436 Essex Road
  • London
  • N1 3QP

Act as a support to parents whose children are suffering from these disorders to bring about a greater public awareness of Mucopolysaccaride diseases, and to raise fund for research into their treatment.

Address:

  • MPS House
  • Repton Place
  • Amersham
  • HP6 9LP

Offer support to families and individuals affected by rare chromosome disorders. Publish a newsletter three times a year. Produce a database detailing lifetime effects of rare chromosome disorders on affected members. Provide information for people affected by rare chromosome disorders and professionals. Open Mon-Fri, 9.00am - 5.00pm, answerphone at all times.

Address:

  • PO Box 2189
  • Caterham
  • Surrey
  • CR3 5GN

Support group for people with Xeroderma Pigmentosum - a rare genetic disorder which causes extreme sensitivity to the sun's ultraviolet rays. And those with other light sensitive or UV sensitive conditions. We produce a Newsletter 3 times a year. Hold two meetings a year including a weekend night time camp called the Owl patrol. Offer grants for equipment for UV protective equipment. Opening Hours: Monday 1-4 pm. Tuesday 10-4 pm. Wednesday: Closed. Thursday 1-4 pm. Friday 10-1 pm.

Address:

  • XP Support Group
  • Instron House
  • High Wycombe
  • HP12 3SY

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