About the group.
The Hereditary Multiple Exostoses Support Group was founded in September 1997 by Christopher Clarke, Dawn Searle and Helen Small, all parents from affected families. In March 2002 it became a Registered Charity (Registration Number 1091069). The Group is entirely supported by donations and voluntary subscriptions.
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 of your feelings by sharing them with other families in similar situations geographically. We have a helpline which is available seven days a week and we can offer email support. Please see our contact page for further information.
Our website is very informative and contains an abundance of helpful topics for you. We offer positive advice and support on experiences. We also have an International Noticeboard section for members where individual members can place their stories for feedback from other members. We also produce a newsletter every six months detailing up to date information, research findings and forthcoming events.
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.
We currently have approximately 380 families registered with our Support Group.
We are a member of GIG a Genetic Interest Group who are a national association of patient organisations with a membership of over 130 charities who support children, families and individuals affected by genetic disorders. One of their goals is to promote awareness and understanding of genetic disorders
At present we have 11 trustees who serve on the Committee including myself, secretary, treasurer, research developer, fundraiser, website developer and one national contact who is responsible for initial contact with new members, sending out new membership packs and up to date HME literature. All our committee members are volunteers who are connected to HME either themselves or via family members. The Committee meets twice a year and holds regular teleconferences. In between meetings any big decisions that require committee approval are normally done either by email or telephone.
Group aims to adopt a positive approach to the support and care of families and individuals affected by HME. We endeavour both to educate and learn more about the genes that cause HME. Our overall aim is to make a difference to people affected by HME.
Aims of the HME Support Group
- To offer support to families affected by HME
- To link families in similar situations and geographical areas
- To provide up-to-date information on the condition
What does the Group offer you?
- A sympathetic contact point for those newly diagnosed
- Linking with others similarly affected
- Information on the condition and up-to-date research findings
- Regular meetings of the Group
How can you help us?
- Support the Group by becoming a member
- Make a donation to the Group
- Share your experience and information
- Write an article for our newsletter
- Hold a small fund raising event such as a coffee morning