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 Porphyria.
Porphyria Association (PVAP) for Dutch patients with Acute Porphyria
The Porphyria Association (PVAP) is founded by and for Dutch patients with Acute Porphyria.
The PVAP is a national patient association for patients, family members, care givers and other stakeholders.
https://www.pvap.nl/
Patient association for patients with Erythropoietic protoporphyria
One of the goals of the Dutch patient association for patients with erythropoietic protoporphyria is to create more awareness for EPP. The associations stimulates research on the cause and treatment of EPP and strives to establish and maintain contact with EPP patients and their family members. This is mainly done by organizing meetings and sending out newsletters.
https://epp.info/ (Dutch only)
Global Porphyria Advocacy Coalition
The Global Porphyria Advocacy Coalition (GPAC) operates as an umbrella organization for national porphyria patient advocacy organizations. GPAC maintains a global network that tries to safeguard the interests of all porphyria patients worldwide.
https://gpac-porphyria.org/
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)
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)