Helpline:
0115 987 0080



Our Services

Alert Card

We produce a card that can be carried by someone with Myotonic Dystrophy to inform medics of special requirements 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 the Alert Card; they are available free on request.

Conferences

Each year (usually in April/May) the Group hosts a full day conference at a regional venue. Specialist speakers covering a wide selection of topics affecting Myotonic Dystrophy are invited. Workshops covering a number of related issues are also provided. Discounted conference fees are available to Group members. Go to NEWS and EVENTS for details. 

Awareness Programme

Raising awareness of the disorder amongst the general public and the medical profession is a key objective for the Group. This involves securing television, radio and newspaper coverage and generally publicising the existence of the group, for example, by attending professional conferences and distributing information. By promoting understanding and awareness we strive to improve care provision and day to day self management.

A new leaflet has been produced intended for wide distribution to GPs giving tips for diagnosing myotonic dystrophy. You can help general awareness by getting the leaflet to GPs in your area via surgeries and Health Centres. Written 'by General Practitioners for General Practitioners' it can be Downloaded Here Further copies can be obtained from the office.

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 individual’s health may be affected by Myotonic Dystrophy and is again very useful in case of emergency.

Download a PDF of the Care Card or phone or write to the Group office.

MDSG Items for sale

MDSG Wrist Bands £1.50 p&p inc

2012 Diaries £4.00

Recipe Books £7.00

Blue ink Biros - £0.50

Gilet - £18.00

Sweatshirts - £12.50

Polo Shirts - £11.00

Myotonic Dystrophy – The Facts,(2nd edition) by Prof Sir Peter Harper, published by Oxford University Press in 2009. Cost of £13.00 non members and £5 for members incl. P&P within the UK.

Newsletter

We produce a regular newsletter which is sent to everybody on our mailing list. Currently over 1700 copies are distributed detailing events, information and research developments. To join our mailing list Contact Us by phone, letter or email.

Contact Families 

Our national network of Contact Families  can provide practical non-medical information, and will understand the demands of the condition on patients, families and other carers. If asked to do so, they can put people in touch with other affected families and individuals in the area. Find your nearest family on our map.

Regional Meetings

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

Telephone Listening

We provide emotional support and advice through our helpline 0115 987 0080.