Videos: Self Management of Rare Conditions
Robert McIver shares his story of managing Alkaptonuria a genetic condition that only affects 1-4 people per million, from a rural area in Scotland:
Tel: 07886 709633(Mon-Fri 9am-5pm)
The Society is a Registered Charity in England and Wales No. 1101052, established in 2003. It provides support and information and can link families where appropriate. The Society has an online discussion board via its website which is used by people from around the world.