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Patient Resources

When a patient is diagnosed with Pompe disease, knowledge and access to information are powerful tools. 

Patients who are educated about their condition and treatment options are better prepared to manage their own health, engage in important dialogues with healthcare professionals and the general public.

To assist with this process we have provided you with links to local and international support networks and patient support programmes that will help patients with their journey with Pompe disease.

We are committed to empowering patients through knowledge to ensure they fully understand their condition. 

Support Groups

Support Groups

Though Pompe disease is rare, there are patient groups and organizations throughout the world that offer information, advice, and support to people living with Pompe disease.