1st March 2023 at 17:00 (CET)
PROMs and PREMs in ENROL
Webinar provided by Dr. Mariangela Pellegrini and Jacqueline Dubow
Mariangela Pellegrini earned a PhD in Philosophy with highest honour at the Université Paris-Sorbonne, France. In pursuing these fields of study she approached to medical ethics, bioethics and to the domain of medical innovation. Currently she is the Educational & Patients Program manager for the ERN-EuroBloodNet, the European Network of Rare Hematological Diseases, launched by the European Commission in 2017. Based in Paris at the AP-HP Hôpital Saint Louis, she mainly involves the role of coordinator of educational activities and patients’ activities. She is also engaged in European Cross Border Health related topics. She coordinates the patients activities promoted within ENROL, the European Rare Blood Disorders Platform. Finally, she contributes to the “WP3 Patient Centered Research” of the European Rare Disease Research Coordination and Support Action (ERICA).
Jacqueline Dubow before joining CCM, had a 40-year career in international development, including 27 years at the World Bank in Washington. She has advised governments and companies on operational and strategic issues in the health, education, new technologies and transport sectors. Since 2018, she has been Vice President of CCM and is a member of the MDS Alliance Steering Committee.
CCM, founded in 2006, is the only association in France for patients with myelodysplasias. The association has over 500 members throughout France. Its objective is to inform and empower patients. CCM also collaborates with the Groupe Francophone des Myélodysplasies (GFM), and participates in research and studies on myelodysplasias.
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