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When did the organisation start?The charity was originally set up as an unincorporated association in 1989 by parents of a 14 month old child who had died of the disease. Since then it has gradually expanded, and in 2002 became a charitable company limited by guarantee. The Foundation now has over 5,000 members, the majority of whom have had some direct involvement with the disease either through contracting it themselves or by having a family member ill with the disease. It now has an income of over £2 million per year. | Index | Previous Question | Next Question | |