Peer support groups
Some people find comfort in sharing their experiences with other patients or family members. By sharing experiences or feelings, one can help each other. In the field of metabolic diseases, there are several patient associations or foundations that make it possible to get in touch with other patients or family members. In addition, these associations often organize patient meetings and fundraising events, and you can find additional information about the disorder on their websites. Below is an overview of patient associations and foundations in the field of Pompe disease.
Association for adults and children with an inherited metabolic disorder (VKS)
This patient association is founded for all patients with a metablic disorder and stands up for the patient's interests. VKS offers the opportunity to get in touch with other patients and their family members, and you can find information and the latest news about various metabolic diseases on their website.
www.stofwisselingsziekten.nl (Dutch only)
The Dutch Neuromuscular Disease Association
The Dutch Neuromuscular Disease Association is devoted to promote research on neuromuscular disorders. Patients can meet each other in the so-called Myocafé. On this online platform patients and family members can share experiences with each other.
www.spierziekten.nl (Dutch only)
Stofwisselkracht Foundation
The Stofwisselkracht foundation raises funds for research projects on metabolic disorders by organizing sporting events and other activities. On their website you can read all about the activities of the foundation and you can also find information about metabolic disorders.
www.stofwisselkracht.nl (Dutch only)
Metakids
The Metakids foundation fights for a world in which metabolic diseases are treatable and no child has to die from them anymore. Metakids is committed to raising awareness for the severity, scope and impact of metabolic diseases. Through major campaigns, Metakids raises money for research on metabolic diseases. On the website you will find information about metabolic diseases, news and you can also read patients' stories.
www.metakids.nl (Dutch only)
Pompe disease foundation
This foundation was founded by the parents of a Pompe patient and is dedicated to generating better awareness for Pompe disease. Through fundraising, the foundation tries to stimulate research on Pompe disease. On the website of the foundation the personal story of the parents can be read, as well as the stories of other patients and their families. There is also information about the disease, the latest news and events organized by the foundation.
stichtingziektevanpompe.nl (Dutch only)
Princess Beatrix Fund for Muscle Disease
The Princess Beatrix Fund for Muscle Disease fights for a world free of muscular disorders. The foundation supports research on the cause of muscular disorders, faster diagnosis and the development of better treatments. On the website you can find updates about the latest research projects, information about different disorders and patient stories.
www.spierfonds.nl (Dutch only)