Wildly unpredictable and with no known cause or cure, the disease causes severe pain and deformity, and on x-rays makes bones look as though they’re coated with melted candle wax.

In some sufferers, its progression is rapid, while in others it is gradual. Attempts to remove diseased areas surgically can cause further new bone growth.

Although it is thought that there may be a million sufferers of melorheostosis around the world, only a few hundred have so far come forward to the US-based Melorheostosis Association (www.melorheostosis.com) with details of their condition.

With so few case studies at their disposal, scientists and doctors have struggled to establish patterns.

The launch of the site will be supported by information packs for sufferers and their families, press and television coverage campaigns, and a programme of fund-raising projects aimed at raising £500,000 initially.

Because the new web site has been built by optimisation specialists at Harrogate-based Webevents Ltd, it will secure top rankings on the major search engines, and so catch the attention of anyone using common terms such as ‘bone disease’ to find information.

The site has also been set up to catch the attention of people who may display the symptoms of melorheostosis but who have been diagnosed with another, similar condition. In some cases the wrong treatment can exacerbate the problem.

MAUK can be contacted on 01423 709993, or by email via campaign coordinator Martine Phipps at martine@melo.eu.com.