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The National Information Centre for Metabolic Diseases |
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A Brief Guide to our Services
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We provide up-to-date, sourced information covering over 730 metabolic conditions. This information can be: Ø Internet Summaries Ø Short Summaries Ø Full packs of information on all conditions Ø Long term support for families and professionals Ø Information about the latest research Additional information and support are also available in relation to the health system, support for benefits, welfare rights, medicine, empowerment, personal issues, educational and job support, links with other specialists and families Information regarding care, social services and accessing education or special needs support. Written or verbal support for attaining services available locally, support regarding diagnosis, sharing information with family members and advice on genetic counselling and issues around genetic testing. All information is free to members but we ask professionals for a small donation to help us towards our administration costs. As a bonus, · Freephone for families 0800 652 3181. · an message forum has been established for families to share their experiences and for mutual support which will be extended to cover all metabolic diseases · A network of Befrienders is based around the UK who have vast experience of metabolic conditions, bereavement, loss and coping. · Our Young Person’s Adviser supports young people and offers two young people’s newsletters and a pen pal scheme. · Our conferences provide an opportunity to meet experts, parents and professionals. · We publish a member’s magazine three times a year with up to date news, case histories and information. · Limited support grants to members/long term service users · An email research newsletter is available on a regular basis.
For information on any of the above please phone 0845 241 2173 or email info.svcs@climb.org.uk
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