Join us on the 11th May 2013 for a FSH Information Day for patients and families living with FSH, organised by the FSH-MD Support Group UK and the Muscular Dystrophy Campaign. This will be an opportunity to hear the latest updates in research, diagnosis and management of the condition from expert clinicians and researchers. Our …
Category Archive: Uncategorized
Permanent link to this article: http://fsh-group.org/?p=674
NHS Reforms May Have Devestating Impact on Rare Conditions
MDC has expressed concerns about the White Paper published by the Health-Secretary, raising fears it will put people with rare conditions at risk…. Read Me
Permanent link to this article: http://fsh-group.org/?p=540
Report Published on FSHD Standards of Care and Clinical Trial Rediness
A report has been published on standards of care and clinical trial readiness for facioscapulohumeral muscular dystrophy (FSHD). The report is based on the outcomes of a European Neuromuscular Centre (ENMC) workshop held in the Netherlands in January. Twenty-four expert clinicians and scientists from six European countries, the USA and Australia attended the workshop. Read …
Permanent link to this article: http://fsh-group.org/?p=535
MDC Launch Wheelchair Report
Health Minister Paul Burstow MP with campaigners, Baroness Thomas of Winchester and Robert Meadowcroft. The Muscular Dystrophy Campaign today launched its hard-hitting new report, Get Moving – the case for effective Wheelchair Services, at an event in the Houses of Parliament hosted by All Party Parliamentary Group for Muscular Dystrophy Chair, Dave Anderson MP, and …
Permanent link to this article: http://fsh-group.org/?p=545
MDC Statement on DLA
We are appalled that this decision has been announced as a cost cutting measure, revealing the intention for the medical assessments to reduce the numbers of people receiving this essential support. As a charity supporting people with muscle disease we have particular concerns about these assessments because, as with many rare illnesses, many medical staff …
Permanent link to this article: http://fsh-group.org/?p=542
