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Cutaneous Lymphoma Virtual Board of European Experts

Consisted of 18 health professionals specializing in CL and 3 patients organizations covering CL who are engaged in several EuroBloodNet initiatives like regular meetings in Clinical Patient Management System to consult rare and complex CL cases, and Topic on Focus Educational Webinars for health professionals or patients organizations

Cutaneous Lymphoma Virtual Board of European Experts has been established to provide expertise in different identified and agreed initiatives, to cover the needs due to the ultra-rare prevalence using the facilities provided by ERN:

  • Educational programs for health professionals and patients organizations.
  • Repositories of educational material for health professionals, patients organizations, patients and their families.
  • Telemedicine (CPMS).
  • Centralizing the access to cutting-edge diagnostics tools and therapies above borders, developing international guidelines.

LIST OF HEALTH PROFESSIONALS SPECIALIZED IN CUTANEOUS LYMPHOMA

Country Expert Healthcare Provider Membership
AU Robert Knobler Medical University of Vienna Affiliated Partner
DE Ulrike Wehkamp Universitätsklinikum Schleswig-Holstein Supporting Partner
DE Rudolf Stadler Johannes Wesling Medical Centre Supporting Partner
DE Christina Mitteldorf Universitätsklinikum Göttingen Supporting Partner
ES Pablo Ortiz-Romero Hospital Universitario 12 de Octubre Supporting Partner
FR Marie Beylot-Barry CHU de Bordeaux Supporting Partner
FR Martine Bagot Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis Member
FR Adèle De Masson Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis Member
IT Pietro Quaglino AOU Turin Supporting Partner
NL Maarten Vermeer Leiden University Medical Center Member
NL J Hendrik Veelken Leiden University Medical Center Member
PL Anna Dabrowska-Iwanicka  Maria Sklodowska Curie Memorial Institute of Oncology Member
PL Joanna Romejko-Jarosinska Maria Sklodowska Curie Memorial Institute of Oncology Member
PL Grzegorz Rymkiewicz  Maria Sklodowska Curie Memorial Institute of Oncology Member
PT Margarida Lima  Centro Hospitalar do Porto, EPE Member
SW Emmanuella Guenova Lausanne University Hospital Supporting Partner
SW Werner Kempf University Hospital of Zürich Supporting Partner
UK Julia Scarisbrick University Hospital of Birmingham Supporting Partne

LIST OF PATIENTS’ ORGANIZATIONS COVERING CUTANEOUS LYMPHOMA

Name Website Country Coverage Membership
Lymphoma Coalition https://lymphomacoalition.org International Supporting partner
Cutaneous Lymphoma Foundation

https://www.clfoundation.org

International Supporting partner
France Lymphoma Espoir https://www.francelymphomeespoir.fr France Supporting partner

If you are an official patients' association covering Cutaneous Lymphomas and you want to collaborate in this list to support CL patients in your country, please contact: Mariangela.pellegrini(ELIMINAR)@aphp.fr 



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