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Newsletter no. 4 - April 2019


Sickle cell disease: clinicians, experts, institution and patients met in Bari

Last March 4 the Gianni Benzi Foundation organized in Bari the conference
"Congenital Hemoglobinopathies: scientific updates and services organization for sickle cell disease". All the relevant stakeholders, including health authorities policy managers, patients and other public and private experts came back to discuss after a long time scientific updates and, above all, organization of services, to identify a common and integrated approach to hemoglobinopathies and, in particulare, to the sickle cell disease.
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International comparison on thalassaemia registries: a new publication

The Gianni Benzi Foundation has contributed to a new paper on the challenges and opportunities of thalassemia registries, published on the Acta Inform Med magazine in March 2019. The paper focuses on patient registries as a method of improving quality and cost efficiency in health and healthcare.
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New challenges for the Gianni Benzi Foundation

This 2019 has kicked-off with new three challenging research projects: ARISE - African research and innovative initiative for sickle cell education: improving research capacity for service improvement, EJP RD - European Joint Programme for Rare Diseases and Pepper - Platform for the evaluation, validation and processing of research performances.
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New contect4children consortium selects inaugural research portfolio to advance development of innovative paediatric medicines

The conect4children (c4c) consortium announced the selection of its first portfolio of pan-European paediatric studies aimed at advancing the understanding of high priority medicines commonly used in babies, children and young people in Europe. The four inaugural studies will be conducted by academic institutions, in addition to three or four studies by industry partners, covering different diseases and age groups.
Read the press release

Discovering ARISE project: interview to Fedele Bonifazi


Discovering ARISE Project: interview to Fedele Bonifazi

EJP RD kick-off meeting in Paris

On January 30-31, the European Joint Programme on Rare Disease officially kicked-off in Paris. The two day meeting was opened to the members of the Executive Committee, that defined and presented the work packages, tasks and subtasks to be implemented during this 60-months project funded by H2020 Programme.
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Save the date! 7th EAHL Conference
Toulouse (France), September 25-27

The Benzi Foundation is partner of the 7th EAHL Conference "Innovation & Healthcare - New challenges for Europe", that will be held in Toulouse on September 25-27. In this framework, the Foundation organizes the workshop "Innovative medicine and research: ethical, legal and regulatory issues". Deadline for early registration to the EAHL Conference: May 31, 2019.
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New gene therapy to treat transfusion-dependent β-thalassemia

EMA has recommended granting a marketing authorisation in the EU for Zynteglo, BlueBird Bio's first gene therapy for patients 12 years and older with transfusion-dependent β-thalassemia (TDT).
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International Clinical Trials Day 2019

On May 20 ECRIN will celebrate the International Clinical Trials Day 2019 in Paris. ICTD will bring together ECRIN's internal stakeholders and partners, and additional scientists and policy makers from France, the rest of Europe and beyond.
Register now

Public consultation on EMA Regulatory Science to 2025 strategy 

EMA has launched a six-month public consultation on the draft "Regulatory Science to 2025" strategy, the plan for advancing EMA's engagement with regulatory science over the next five to tn years. All the stakeholders are invited to send comments by 30 June 2019 using the online questionnaire.
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