 From the Chair Hello everyone and welcome to our Spring Newsletter. I am delighted to report that the 2003 Conference with AGM went very well and it was certainly worth all the hard work. See inside for more details. One of the things that became clear to me is how much the Group is evolving and that we are no longer a small number of sufferers dotted about the country. We are a body of people with a voice and it was good to witness lively discussions between our members and expert speakers in a positive and informative manner. It really feels as though we are beginning to have an impact on the world of HME! Many of our members said that they felt there was a need to raise awareness of HME throughout the medical profession. It is one of many rare genetic conditions and we could not possibly expect our local GP to know about all of them in detail. However, if we could bring to their attention our existence and website, this might go some way to helping. Orthopaedic Surgeons will know of the condition, but probably not about us. So one of our major aims for the forthcoming year will be to look into and carry out ways of raising awareness in these areas. Please help us by spreading the word as much as possible! Another aim is to update the content and design of our existing leaflets and to produce some new information sheets. We are appealing for help with this and would love to hear from any members with experience in this field who may be able to help with the writing, design or production of these. Last April we introduced the annual voluntary subscription and this has worked well, providing funds to help with newsletter costs and day-to-day running of the Group. We are now enclosing a form for this year’s contribution and would like to thank you in advance for your support in this matter. Finally, through recent personal experience with my son, I have been starkly reminded as to why we founded the Group in the first place. It was to provide support and understanding to those people and their families who are affected by the condition. The support comes in many forms ranging from a sympathetic ear to providing information on disability allowances. Problems with HME come and go, but in those difficult times, feelings of isolation are common and we can help! So please don’t hesitate to give us a call – either your local National Contact (details inside) or on 01438 861866. With very best wishes for the summer months
Helen Small
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Copyright © Hereditary Multiple Exostoses Support Group 1997-2007
Last updated 10 June 2007
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