Services

Telephone Listening - We provide emotional support and advice through our helpline 0115 9870080.

Contact Families - We can put you in touch with other affected families and individuals in your area. They will understand what you are experiencing and be able to offer advice. We have a national contact family network and encourage international links.

Newsletter - We produce a regular newsletter which is sent to everybody on our mailing list. Currently over 1200 copies are distributed detailing events, information and research developments.  To join our mailing list Contact us.

Leaflets - The Support Group produce information leaflets which cover a variety of topics - Anaesthesia, Bowel problems, New Families, etc.  These leaflets can be ordered by downloading and completing this form. 

Regional Meetings - In some areas members arrange regular get-togethers enabling families to meet in an informal setting.  Please look at the News page for more information.

Annual Conference - Each year the group hosts a conference inviting specialist speakers. Workshops covering a wide range of related topics are also provided.
For details of this years conference click here.

International Dystrophia Myotonica Consortium (IDMC) - Every two years, scientists and clinicians from around the world meet up to discuss the latest research findings and possible therapies for Myotonic Dystrophy. The last conference was held in Quebec, Canada - October 19th - 22nd 2005. IDMC-5 Conference Report .  

This years conference was held in Milan, Italy 12th - 15th September 2007. Please follow this link to the IDMC-6 website.  A report from this conference will be available soon.

The conference in 2009 will be held in Wurzeburg, Germany.

Awareness Programme - We run a programme to raise awareness of the disease amongst the general public and the medical profession. This involves television, radio and newspaper reports, attending professional conferences and distributing information. By promoting understanding and awareness we strive to improve care provision and day to day self management.

Alert Card - We produce a card that can be carried to inform medics of the special requirements of someone with Myotonic Dystrophy in case of emergency. Prior to having surgery the anaesthetist and surgeon should always be informed of the condition and the alert card is an ideal way of providing the necessary information. Anyone with Myotonic Dystrophy is urged to carry one as a precaution and they are available free on request.

Care Card - Also available free on request is a care card that can be used to carefully record dates and details of medical appointments which can be carried so that the correct specialists can be contacted if necessary. The card also details how an affected individuals health may be affected by Myotonic Dystrophy and is very useful in case of emergency. Click here to download and print off a copy of the from the Scottish Muscle Network.

If you would like to support our work or to become a member of the group click the Support us button at the top of this page.

Page last updated : 27/09/2007