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.
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:
-
Raising awareness amongst patients and clinicians of the degree to which patients can improve their condition with appropriate care.
-
Leading the production of Clinical Practice Guidelines for all muscle GSDs through international consensus (see campaign 5).
-
Promoting the establishment of Centres of Excellence and encouraging patients to attend those centres, in order that they build in-depth expertise.
-
Promoting the use of multidisciplinary teams to support patients with topics beyond the neuromuscular, including specialist nurse, physical therapist, dietician and psychologist.
-
Provide online and printed resources to support all the above.
-
Maintaining an on-line international directory of clinicians with expertise in muscle GSDs.