CAMPAIGN 4

CLINICAL PRACTICE GUIDELINES

THE ISSUE
At present, there are no internationally agreed ‘Clinical Practice Guidelines’ for muscle GSDs. This presents a distinct challenge for both patients and clinicians. Inappropriate management can lead to poor patient outcomes and reduced quality of life.
Given that the mainstay for managing muscle GSDs is effective
day-to-day self-management, it is vital to have standardization of care based on best practice.
OUR GOAL

To optimize patient care through access to systematically developed guidelines that outline diagnostic and management recommendations.

 

OUR OBJECTIVES

We will work towards our goal by:

  1. Working with national GSD organizations, researchers and clinicians to inform the development of Clinical Practice Guidelines.

  2. Communicating the patient perspective .

  3. Providing support/information to all clinicians who care for patients with muscle GSDs.

  4. Disseminating Clinical Practice Guidelines to clinicians.

What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

Muscle GSDs links
If you have another muscle GSD please contact us.

Site updated: 07/2020.

© IamGSD 2017 – 2020.

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