As a medical professional, you can submit your patient records for opinion to the Centres of Reference for Rare Diseases. The files received will be discussed at the next multidisciplinary consultation meeting of the centre.
For any request, please send your completed PCR forms by email to the address indicated for each disease (you can download the form(s) below so that you can complete them directly from your computer). The forms are in French but you can fill them in English if preferred.
RCP sheet for Primary amyloidosis and other immunoglobulin deposition diseases
To send to : RCPAmylose@chu-limoges.fr
Monthly RCP from 17pm à 20pm : 09/06/2021, 23/06/2021
RCP sheet for Hereditary angioedema
To send to : AMCarrillo@chu-grenoble.fr
Monthly RCP from 15pm à 17pm : 14/06/2021, 05/07/2021, 20/09/2021, 11/10/2021, 15/11/2021, 13/12/2021
RCP sheet Acquired and inherited aplastic anemia
To send to : valerie.quinet@aphp.fr
For Diamond-Blackfan anemia files : thierry.leblanc@aphp.fr
RCP 1st et 3rd Wednesday of the month : 26/05/2021, 09/06/2021, 23/06/2021
RCP sheet for Autoimmune Cytopenias
To send to :
– For adult files : marc.michel2@aphp.fr
Monthly RCP from 0:45pm to 2pm: 16/06/2021
– For pediatric files: For your diagnostic or therapeutic questions, please complete the cytopenic RCP file and return it before the day before the RCP 2:00 pm by email to the CEREVANCE: nathalie.aladjidi@chu-bordeaux.fr
Monthly RCP from 1pm to 2pm : 01/06/2021, 06/07/2021, 03/08/2021, 07/09/2021, 05/10/2021, 02/11/2021, 07/12/2021
(cartography of pediatrics and adults centers)
RCP sheet for Histiocytosis
For adult files : gwenael.lorillon@aphp.fr, julien.haroche@aphp.fr
For pediatric files : jean.donadieu@aphp.fr
Monthly RCP (1st monday of the month, calendar here) : 07/06/2021, 05/07/2021
RCP Sheet for Castleman disease(s’)
To send to : contact@castleman.fr
RCP every two months from 5pm to 7pm :
RCP sheet for Mastocytosis
To send to : avis.ceremast@nck.aphp.fr
Monthly RCP from 10am to noon : 21/05/2021, 11/06/2021, 09/07/2021
RCP sheet for Thrombotic microangiopathies
To send to : paul.coppo@aphp.fr and raida.bouzid-saadaoui@aphp.fr
In case of emergency, call directly 01.49.28.26.21 or 01.49.28.20 dect 80082.
Monthly RCP from 3pm to 5pm : 03/06/2021, 01/07/2021, 05/08/2021, 02/09/2021, 07/10/2021, 04/11/2021, 02/12/2021
RCP sheet for Chronic neutropenia and LGL Proliferations
To send to : trs-registre-neutropenies@aphp.fr and to rcp@marih.fr
Monthly RCP from 4pm to 6pm : 17/06/2021, 15/07/2021
RCP sheet for hypereosinophilic syndromes
To send to : avis.cereo@gmail.com
Monthly RCP : 02/09/2021, 23/09/2021, 21/10/2021, 25/11/2021, 16/12/2021
RCP sheet for Commun Immune Deficiencies in adults
Monthly RCP from 5pm to 7pm : 21/06/2021 ; 12/07/2021
To send to : claire.fieschi@aphp.fr , felipe.suarez@aphp.fr et à rcp@marih.fr
RCP sheet for Inherited immune deficiencies
Send the medical report by email to : registre.ceredih.nck@aphp.fr
Monthly RCP
Monthly RCP Occitania sheet to be sent by email to : cougoul.pierre@iuct-oncopole.fr; pasquet.m@chu-toulouse.fr