Please find below a selection of links to other pages which may be of interest.

If you know of any other pages we may like to include, or run a group yourself, please contact us.


Support groups from around the world getting together for the IDMC12 in 2019.

It is so important for the Myotonic Dystrophy community to work together, and one of our aims is to share information and advice from all over, to help and support everyone. Whether than be support groups, charities, grant giving or equipment giving trusts.

No one group or charity covers everything, and we hope you find extra help and support from the following pages.


Congenital Myotonic Muscular Dystrophy Network


Please be aware this is a CLOSED group - only available for parents and carers of a child with Congenital Myotonic Dystrophy.

It is open to families from all over the world.

Request to join and then check your messages for the response. We look forward to seeing you there!

Muscular Dystrophy UK

We have received, and continue to be provided with, excellent support from MDUK.

Although it is a charity for all Muscular Disorders, all donations made through us have been ring-fenced for research into Myotonic Dystrophy.

MDUK have links with the scientists working on research and the potential for a cure. As well as providing Peer support and differentiated advice on all Muscular Dystrophys.

Myotonic Dystrophy Support Group.

Based in Nottingham, UK.

The MDSG was set up to support families with DM. Although it is aimed more to late/adult onset, the MDSG can provide information and support to families in many ways.

Including an annual conference.


Myotonic Dystrophy Foundation

Based in USA.

The MDF is an amazing source of information and Support, available to people all over the world.

We recommend ordering a 'Toolkit', it is packed with information for families and professionals, and is great to have on hand.


Myotonic Dystrophy Support and Information

This is a closed facebook group which provides a support network for people with Myotonic Dystrophy and other forms of Muscular Dystrophy (and families).


It is a world-wide group. Please send a message with your join request.

AFM (France)

The French Muscular Dystrophy Association (AFM-Téléthon) is composed of patients and their families who are affected by genetic, rare and progressive diseases.


DM-Family (Japan)

A lovely support group in Japan who we have had the pleasure of spending time with over the years.

The website is in Japanese, but you may enjoy the photo's if you cannot read the words.