ERN-EuroBloodNet Welcomes New ePAG Representatives: Jana Pelouchova and Marius Tanase

ERN-EuroBloodNet is pleased to welcome Jana Pelouchova and Marius Tanase as new European Patient Advocacy Group (ePAG) representatives for the Myeloid Malignancies and Bleeding and Coagulation Disorders subnetworks respectively.

ERN-EuroBloodNet is pleased to welcome Jana Pelouchova and Marius Tanase as new European Patient Advocacy Group (ePAG) representatives for the Myeloid Malignancies and Bleeding and Coagulation Disorders subnetworks, respectively. Their experience and dedication to patient advocacy will greatly contribute to the network's mission of advancing patient-centered initiatives and improving outcomes for those affected by rare hematological disorders.

Jana Pelouchova brings a wealth of experience in patient advocacy, having been deeply engaged in the field since her diagnosis with Chronic Myeloid Leukemia (CML) in 2002. Her nomination for being ePAGs of the ERN for Myeloid Subnetwork came from MDS Alliance.

She is Chairperson at Diagnoza leukemie, z.s., President of the Leukemia Patient Advocates Foundation, and a Steering Committee Member of both the CML Advocates Network and the CLL Advocates Network.

Jana has dedicated her career to supporting leukemia patients through national and international initiatives. She founded a cancer support organization for patients with leukemias, MDS, and MPN in the Czech Republic and served on the Patient Board of the Czech Ministry of Health from 2017 to 2021. She actively supports patients through helplines, online forums, and educational seminars.

On an international scale, Jana is a co-founder and Trustee of the Swiss-based Leukemia Patient Advocates Foundation, which oversees global patient networks for CML, CLL, Acute Leukemias, and MPN. She is also engaged in the MDS Alliance and has served on the European Cancer Patient Coalition Board, the ESMO Patient Advocacy Working Group, and the Ethics Advisory Board of the IMMUNE-IMAGE consortium. Additionally, she plays a role in the European Hematology Association's Patient Advocacy Committee.

Marius Tanase, a passionate advocate for patients with bleeding disorders, joins ERN-EuroBloodNet as an ePAG representative for the Bleeding and Coagulation Disorders subnetwork. A person with severe hemophilia A, Marius has firsthand experience of the challenges related to treatment access and has dedicated himself to addressing these disparities.

With a background in International Economics, Marius has been actively involved in patient advocacy through his work with the Romanian Hemophilia Association and the European Hemophilia Consortium. His advocacy focuses on achieving equity in treatment access and improving care for patients with hemophilia and other bleeding disorders.

Marius believes in a step-by-step approach to creating meaningful change and is committed to developing and implementing projects that will enhance patient care and support. He aims to collaborate closely with community leaders to build a future where every patient has access to diagnosis and treatment, reinforcing the shared vision of ERN-EuroBloodNet.

We extend a warm welcome to Jana and Marius and look forward to their contributions in shaping the future of patient advocacy within ERN-EuroBloodNet.