The Netherlands (Rotterdam)

City
Rotterdam
Name of Centre
Porphyria Center Rotterdam – Erasmus MC
Full address
Wytemaweg 80
Nc-507
3015 CN Rotterdam
The Netherlands
Email
stofwissseremovelingsziekten@erasmusmc.nl
lab.porfyrie.cenremovetrum@erasmusmc.nl
Website
https://www.erasmusmc.nl/lysosomale-en-metaboleziekten
Tel
+31 10 7035415
Fax
+31 10 7041805
Director
J.G. Langendonk, MD, PhD
Email
stofwissseremovelingsziekten@erasmusmc.nl
Tel
+31 10 7040574 via outpatient clinic
+31 10 7040704 outside office hours
Activities
This centre has been endorsed by Ipnet as a Porphyria Expert Clinical Centre (PECC).
The Porphyria Center Rotterdam in the Erasmus MC has many years of experience in treating people with all kinds of porphyrias. There are different types of porphyria, the most common being erythropoietic protoporphyria, Porphyria Cutanea Tarda and acute porphyria. Our centre is the only centre recognized in the Netherlands, recognition is given by the ministry, following a recommendation by the NFU (Dutch Federation of University Hospitals).
The laboratory is certified for all determinations performed in blood, urine and stool. These results are used to diagnose porphyria. The laboratory can also determine the genetic predisposition. Our team consists of metabolic consultants, geneticists, paediatrics, nurse practitioners, outpatient clinic co-workers, and laboratory specialists. Our medical doctors work in the department of internal medicine and are specialized in inherited metabolic diseases, including porphyria.
Family counseling is performed together with geneticists; information on disease-related risks and treatment options are provided. Patients can visit our outpatient clinic, in the department of internal medicine, for medical checks, research and treatment of porphyria. Some treatments take place at the infusion centre and patients who are admitted to the Erasmus MC will stay at the clinical department of internal medicine.
Our nurse practitioners can be contacted via stofwissseremovelingsziekten@erasmusmc.nl
Clinical questions contact
J.G. Langendonk, MD, PhD
Email
stofwissseremovelingsziekten@erasmusmc.nl
Tel
+31 10 7040574 via outpatient clinic
Laboratory contact
E.C.H. Friesema, PhD
Email
lab.porfyrie.cenremovetrum@erasmusmc.nl
e.friesremoveema@erasmusmc.nl
Tel
+31 10 7035415