Hereditary Multiple Exostoses Support Group (HMESG)

Hereditary Multiple Exostoses Support Group (HMESG)

Charity information

Hereditary Multiple Exostoses Support Group (HMESG)

Hereditary Multiple Exostoses (HME) is a rare bone condition that affects mainly children and some adults. It is a condition where extra lumps grow close to the end of any bone, particularly those of the limbs which can cause pain and discomfort and may require surgery. This condition is usually inherited but can be spontaneous. We currently have approximately 385 families registered with our Support Group.

The Support Group was founded in 1997 by three parents of affected children and in March 2002 it became a Registered Charity.

Our Support Group is a great aid to those families who have either been recently diagnosed or as a constant source of comfort. The effect on the whole family can be stressful at times and the Support Group is there to help alleviate some feelings by sharing them with other families in similar situations geographically.

We organise regular Group meetings and conferences with medical speakers who give talks on aspects of HME and related topics. The location of these meetings is varied to reach as many members as possible. This gives our members the opportunity to get together and to learn more about the condition.

Our website is very informative and contains an abundance of helpful topics. We also have an International Noticeboard section on the website for members to make their own contacts. We also produce a newsletter every six months detailing up to date information and forthcoming events.

As well as supporting families affected by HME our aims are also to raise awareness of the condition and of the Group.

We need your help to help fund our group which in turn will help those people affected by HME. We currently rely soley on donations from our friends and families.

With your help we can endeavour both to educate and learn more about the genes that cause HME. We want to continue to explore and idenitfy scientific areas for research and potential research centres in the UK.

We would like to improve our support group literature.

We are currently trying to raise funds for a new and exciting research project that will provide answers to important about this rare condition (1 in 50,000) that have not been answered so far by experts or literature.

This is vital to the future of HME sufferers. As far as we know, there has never been any such collection of information. Little is known about the condition and information for medical professionals is sparse and often inaccurate and out-of-date.

Funding is required for the entire project which will last for many years. This is a very exciting venture for the HMESG and its members.

Planning for this project is taking place now!

Please do not hesitate to contact us for further details if you think you can support us.