CAMPAIGN 5

IMPROVING ACCESS TO CARE

THE ISSUE
As rare diseases, muscle glycogen storage diseases are often diagnosed by clinicians who have not seen the condition before, or perhaps have only a few such patients. It is impossible for them to have a detailed understanding of the condition. Patients need to be referred on to larger centres of excellence with a multidisciplinary team and in-depth experience.
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OUR GOAL

To see that all people diagnosed with a muscle glycogen storage disease are able to access a level of care which assists them to achieve their best possible quality of life.

 

OUR OBJECTIVES

We will work towards our goal by:

  1. Raising awareness amongst patients and clinicians of the degree to which patients can improve their condition with appropriate care.

  2. Leading the production of Clinical Practice Guidelines for all muscle GSDs through international consensus (see campaign 5). 

  3. Promoting the establishment of Centres of Excellence and encouraging patients to attend those centres, in order that they build in-depth expertise.

  4. Promoting the use of multidisciplinary teams to support patients with topics beyond the neuromuscular, including specialist nurse, physical therapist, dietician and psychologist. 

  5. Provide online and printed resources to support all the above.

  6. Maintaining an on-line international directory of clinicians with expertise in muscle GSDs.