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For information on self help groups for rare disabilities and syndromes, contact:
- Contact a Family, 170 Tottenham Court Road, London, W1P 0HA Tel: 0171 383 3555. Network of over 1,000 support groups for families whose children have special needs; parents helpline and one to one contacts; factsheets and other publications.
- The NHS Health Information Service Tel: 0800 665544 will be able to put you in touch with national and local self-help groups for adults and children with rare disabilities or syndromes.
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