In the forthcoming months, starting from April, the ERN-EuroBloodNet is launching two programs focused on Rare Onco-hematological diseases and targeting patients' organizations or patients' community.
The first one, the Topic on Focus on CL targeting patients' organizations is coordinated in collaboration with the Lymphoma Coalition, France Lymphoma Espoir, Cutaneous Lymphoma Foundation and Eurordis.
It aims to disseminate very innovative topics related to Cutaneous Lymphoma among patients' organizations in order to give the visibility to the medical services available in Europe, last quality of life cutting-edge advances in the field of this very rare condition and its treatments options. For English speakers.
The second program, MDS: a topic of interest for patients and their families, is co-organized by the ERN with CCM (the French patient association Connaître et Combattre les Myélodysplasies), the GFM (Groupe Francophone de Myélodysplasies). It aims to disseminate very important topics related to MDS to the patient community and their families: the latest advances in treatment and diagnosis, improving the quality of life in the field of this rare onco disease. For French Speakers.
In both programs, established with a patient-centered approach, each session will be moderated by a duo of an expert physician and a patient representative, who will elaborate the session together. The physician will first introduce the topic and share the clinical knowledge. The patient representative will ensure that information provided can be well addressed to patients organizations or patients community, and will also highlight which are the key crucial concepts for patients to the expert and asking to clarify them to the webinar audience. The patient representative will also moderate the Q&A session.
Other educational online programs under organizations' will be addressed to non-onco rare hematological diseases, such as Sickle Cell Disease or Aplastic Anemia. More details will be shared on the ERN-EuroBloodNet webpage.