The Dutch Pheochromocytoma and Paraganglioma Patient Association, in Dutch: Nederlandse Vereniging voor patiënten met Paragangliomen (NVPG) welcomes you to the English introduction page of our website.
Pheochromocytoma and Paraganglioma
As association we use the term Paraganglioma for:
- Paraganglioma in the Head- and Neck region (our pedigree)
- Paraganglioma in the Thorax and Abdomen Region (or extra adrenal pheochromocytoma)
Paraganglioma are rare neuro-endocrinetumours which can be hereditary as well as sporadic. In the Netherlands 40-50% of paraganglioma’s are hereditary which is higher compared with other countries. This is probably caused by two SDHD and one SDHA founder mutations.
The majority of paraganglioma are and remain benign but malignancy, thus cancer, is seen as well. In case of hereditary paraganglioma there are differences between genetic mutations and the risk for cancer.
In 2005 our association was founded as the Nederlandse Vereniging voor Patiënten met Glomustumoren (hence NVPG). In those days Head- and Neck Paraganglioma were, in the Netherlands, called Glomustumoren.
The trigger for our foundation was the discovery (in the year 2000) of the SDHD mutation on the DNA of a Dutch family with Head- and Neck Paraganglioma. In 2003 a first information day was organized for patients with hereditary Head- and Neck Paraganglioma.
As knowledge about paraganglioma grew our association also developed. The other paraganglioma tumour locations were included and our registered name changed to todays Nederlandse vereniging voor patiënten met Paragangliomen.
Today we welcome everybody as a member with one or more paraganglioma (hereditary or sporadic) throughout the body as well as mutation carriers with a highre risk for the development of paraganglioma but we still use the old abbreviation.
Our goals are:
- Enabling patient contact
- Sharing information about Paraganglioma
Information on this website
Allthough Paraganglioma are the same around the world, with regards to diagnosis, treatment and follow-up there are differences. These are caused by amongst others:
- Differances in health insurance systems per country
- The number of patients and thus experience.
The information (in Dutch) on this website is in part general (paraganglioma and the genetic information) but the specific genetic mutation information is based on the Dutch situation and research.
As patient organization we appreciate cooperation with other organizations worldwide. In the Netherlands we cooperate amongst others with the patient organizations for MEN, Neurofibromatosis and VHL. If you are interested in cooperation feel free to contact us.
The NVPG is a patient organization, we are no doctors. In case you have medical questions we advice you to contact your own PHD or treating specialist.
We took our utmost care in collecting information for our website but as we are volunteers and human we can’t guarantee all information is correct or up to date/still valid.