Welcome to the site of the Porphyria Association (PVAP) for Dutch patients with Acute Porphyria*.
Our association (PVAP), especially intended for patients with acute porphyria, is set up in 2018 by a group of patients. The mission of the PVAP is to improve health, well-being, and care for all the individuals and families suffering from this rare genetic metabolic disease by educating them and their health care professionals. We try to promote their interests through contacts with the Porphyria Expertise Center Rotterdam, Erasmus MC.
The association also mediates and encourages peer contact and supports research for (new) treatments of the disease. We organise regular patient and doctor education days, spread information leaflets, publish newsletters and answer questions of affiliated members on a private Facebook page or by mail.
We are a non-profit organisation financed by membership fees, donations and sponsorships. You can support us by becoming a member. The annual contribution for this is at least € 25,00.
Contact
E-mail: info@pvap.nl
Read more
Excellent and comprehensive information on both acute and cutaneous porphyrias in English can be found at the following sites:
· www.porphyrianet.org
· www.porphyria.org.uk
· www.porphyriafoundation.org
· www.medlineplus.gov/genetics/condition/porphyria/
Diagnosis and treatment
For diagnosis and/or treatment of acute porphyria, it is best to have your attending physician refer you to the Porphyria Expertise Center Rotterdam, Erasmus MC, The Netherlands or to the Isala Porphyria Expertise Center, Isala Zwolle, The Netherlands.
Telephone numbers Porphyria Expertise Center Rotterdam:
Outpatient clinic: (010) 704 05 74
Nurse: 06 2487 9546 (available on working days between 08:00 am and 16:30 pm)
E-mail: metabolicdiseases@erasmusmc.nl
Your referring physician can be connected directly to the metabolic internist on duty via the general telephone number of Erasmus MC: (010) 704 0 704.
Telephone numbers Isala Porphyria Expertise Center, Zwolle:
(088) 624 3350 (available on working days between 8.30 am and 17.00 pm)
(088) 624 5000 (outside office hours).
*Acute and cutaneous porphyrias
Porphyria is a group of disorders that can be roughly divided into acute porphyrias with attacks of acute abdominal pain and cutaneous porphyrias with skin lesions.
The acute (or hepatic) porphyrias consist of 4 different forms:
· Acute intermittent porphyria (AIP)
· Variegate porphyria (VP)
· Hereditary coproporphyria (HCP)
· Aminolevulinate dehydratase (ALAD) deficiency (or Doss) porphyria.
The cutaneous porphyrias consist of 4 different forms:
· Porphyria cutanea tarda (PCT)
· X-linked dominant erythropoietic protoporphyria (XLDPP)
· Erythropoietic protoporphyria (EPP)
· Congenital erythropoietic porphyria (CEP).
For the patients with one of these cutaneous forms of porphyria there is a separate patient association: The Dutch Association for Erythropoietic Porphyria Patients (EPP): www.epp.info.