France (Paris)

This centre has been endorsed by Ipnet as a Porphyria Expert Clinical Centre (PECC).
The CRMR – Porphyries is a clinical centre dedicated to the management of porphyria patients, from diagnosis, treatment, genetic counselling and family testing to patient follow-up.
The clinical service includes consultations and remotely expert opinion to patients and to caregivers by way of teleconsultation.
The centre has a specialized laboratory for the analysis of heme metabolism, allowing the diagnosis of the different porphyrias, as well as the follow-up of patients.
The team is also involved in the research laboratory INSERM U1149, "Heme, iron and inflammatory pathologies" located at the Xavier Bichat Faculty of Medicine (University of Paris).
The CRMR - Porphyries belongs to the G2M network, which includes all French specialists in metabolic diseases.
For all patient support actions, the clinicians of the centre work closely with the French patient organization: Association Française des Malades Atteints de Porphyries (AFMAP).
Finally, the centre participates in two European networks: the Ipnet network, which brings together all the centres specialised in the diagnosis and management of porphyrias, and the MetabERN network which represents 70 European reference centres for the management of metabolic diseases, including porphyrias.