Patient Organisation Partners

The MRC Centre for Neuromuscular Diseases held its first patient organisation representatives meeting on Thursday 13th November at Queen Square.

Please click here for further information.

Please email z.scott@ion.ucl.ac.uk to receive information on future events. 

Partners:

Action Duchenne
www.actionduchenne.org

Association for Glycogen Storage Disease (UK)
www.agsd.org.uk

Becker United
www.beckerunited.com

CMT UK
www.cmt.org.uk

Duchenne Family Support Group
www.dfsg.org.uk

FSH-MD Support Group
www.fsh-group.org

GBS Support Group
www.gbs.org.uk
The Guillain-Barre Syndrome Support Group is a registered charity that supports those suffering from Guillain-Barre Syndrome (GBS), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related conditions in the United Kingdom and Republic of Ireland, in particular by:
- Providing care, information, non-medical advice and other assistance to sufferers and their families
- Promoting research into the causes, prevention and treatment of the illness, and
- Advancing the education of the public and of the medical professoins concerning the illnesses, their causes, prevention and treatment

The Jennifer Trust for Spinal Muscular Atrophy
www.jtsma.org.uk

The Muscular Dystrophy Campaign
www.muscular-dystrophy.org

Myasthenia Gravis Association
www.mgauk.org

Myositis Support Group
www.myositis.org.uk

Myotonic Dystrophy Support Group
www.mdsguk.org

Myotubular Trust
www.myotubulartrust.org.uk

"The relief of disability and the extension of life for those suffering from myotubular myopathy, by promoting the study of, and research into, the treatment and cure of the muscle weakness caused by myotubular myopathy”.

The Myotubular Trust (Registered Charity No: 1113809) was set up in 2006 with the sole purpose of raising research funds to find a cure and / or treatment for myotubular myopathy. The Myotubular Trust wishes to ensure that despite the relative rarity of the condition, research into myotubular myopathy can keep pace with scientific advances being made, and on the cusp of being made, in other fields of muscle disease.

The Trust hopes to fund projects that will help find a cure and / or a treatment for any of the three types of myotubular myopathy (congenital X-linked recessive; congenital autosomal recessive; autosomal dominant), focusing on research that would not generally be funded by public or industrial funding sources.  Since its inception the Trust has raised over £400,000 and made its first call for grants in September 2008.

The Trust also aims to ensure  latest advances in the understanding of the condition and research progress is made available to families and clinicians as and when it becomes available.  We particularly wish to ensure that clinicians are made aware of the up to date view on the prognosis for a newly diagnosed patient, to ensure that better informed decisions are made in what are often life and death situations.

Nemaline Myopathy Support Group
www.davidmcd.btinternet.co.uk