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Patient Advocacy Committee

Current committee members
Derek Elston, United Kingdom (Chair)
Samantha Nier, Switzerland (Vice-chair)
Loris Brunetta, Italy (Vice-chair)
Members representing a Patient Advocacy Organization

Organization
Member

Acute Leukaemia Advocates Network (ALAN)

Samantha Nier

CCI Europe

Anita Kienesberger

CLL Advocates Network (CLLAN)

Pierre Aumont

CML Advocates Network

Jan Geissler

European Federation of Associations of Patients with Haemochromatosis (EFAPH)

Dag…

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Press Release: Economic burden of blood disorders in EU is €23 billion

The economic burden of blood disorders across the European Union, Iceland, Norway and Switzerland amounts to €23 billion per year.

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Highlights from the SWG

Most impactful activitiesHIV Registry (NCT05231135)This unique retrospective and prospective EHA LyG European registry was initiated in August 2021, but recruitment was stalled due to objections from the local Ethics Committee.

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PRESS RELEASE: The future of research in hematology is here

“For the first time, hematologists in Europe came together to develop a roadmap to guide hematology research in Europe” says Professor Andreas Engert, chair of the EHA Research Roadmap Task Force, “Hematology in Europe has achieved a lot, but the discipline must focus and…

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Publications

Ruxolitinib for the management of myelofibrosis: Results of an international physician survey. Ellis MH, Koren-Michowitz M, Lavi N, Vannucchi AM, Mesa R, Harrison CN. Leuk Res. 2017 Oct;61:6-9. doi: 10. 1016/j. leukres. 2017. 08. 002.

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Uptake of CAR T cell therapy in Europe

Feb 05 2019 Posted in Advocacy news Tagged CAR T

Gene (editing) therapy continues to break ground in hematology, showing promising results in tackling severe blood cancers. Yet, its uptake in the European Union is slow, with few patients benefiting from it so far.

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