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THALassaemia In Action 2018 [THALIA2018] [824224] - Operating Grant
Work Programme Management by lead TIF

Start month:1 - End month: 12

WP1 covers all management aspects of THALIA2018 (operational, financial, risk), as well as reporting. The deliverables under this Work packages are an Interim Report in M6 and a Periodic/Annual Report...
WP1 covers all management aspects of THALIA2018 (operational, financial, risk), as well as reporting. The deliverables under this Work packages are an Interim Report in M6 and a Periodic/Annual Report in M12 that will include the Operational Plan of THALIA2018, a quick reference manual for TIF stall members on their annual work.
Education (Pillar I) by lead TIF

Start month:1 - End month: 12

A number of activities are foreseen under three categories:
a) online education tools for patients and healthcare professionals across Europe (T2.1.1. Educational Platform for Healthcare Professional...
A number of activities are foreseen under three categories:
a) online education tools for patients and healthcare professionals across Europe (T2.1.1. Educational Platform for Healthcare Professionals; T2.1.2: Educational Platform for Patients; T2.1.3: TIF Digital Library);
b) capacity building courses for patients, healthcare professionals and volunteers from France (T2.2.1: Capacity Building Course for newly established association and patients; T.2.2: Capacity Building Course for healthcare professionals; T2.3: Traineeship for ESC volunteers) and
c) fellowships for EU physicians (T2.4: Renzo Galanello Fellowships).
Awareness Raising (Pillar II) by lead TIF

Start month:1 - End month: 12

A Dissemination and Awareness Plan (T3.1/WA3.1) will be drafted in M1 with practical tips regarding the implementation of the Dissemination Strategy. TIF website will be translated into French, German...
A Dissemination and Awareness Plan (T3.1/WA3.1) will be drafted in M1 with practical tips regarding the implementation of the Dissemination Strategy. TIF website will be translated into French, German, Greek, Italian and Arabic by the end of 2018 (T3.2/WA3.2) and will be enriched with content from the annual Thalassaemia Video Challenge (T3.3). Thalassaemia Patients Connect Platform (T3.4) and THALIA Mobile App (T3.5) will be used to reach EU-based patients, while a Pocket Guide for Healthcare Professionals will be drafted and disseminated.
Policy Advocacy (Pillar III) by lead TIF

Start month:1 - End month: 12

TIF works in a simultaneous top-down and bottom-up approach, raising awareness among international and European institutions (WA4.5: Information Letter to DG ECHO regarding Syria crisis), creating qua...
TIF works in a simultaneous top-down and bottom-up approach, raising awareness among international and European institutions (WA4.5: Information Letter to DG ECHO regarding Syria crisis), creating quality tools for national health systems (WA4.3: Thalassaemia EU Electronic Health Record/ Architecture) and empowering patients through the establishment of associations wherever there are patients (WA4.1: New Thalassaemia national association [France]) and via the exchange of good practices between associations (WA4.2: TIF EU Twinning Programme).
Research (Pillar IV) by lead TIF

Start month:1 - End month: 12

Through WP5, TIF will inform patients about clinical trials using its educational tools and will invest on the creation of an EU-wide Electronic Health Record. Moreover, TIF Guidelines for the clinica...
Through WP5, TIF will inform patients about clinical trials using its educational tools and will invest on the creation of an EU-wide Electronic Health Record. Moreover, TIF Guidelines for the clinical management of thalassaemia will be given further visibility via their publication in peer-reviewed academic journals (WA5.1) and TIF experts will participate in scientific conferences to raise awareness among the research community about thalassaemia and haemoglobinopathies (WA5.2).
Dissemination of Results by lead TIF

Start month:1 - End month: 12

A number of activities is foreseen to be implemented vua a) online media (website, social media pages, newsletters, email blasts), b) traditional media (articles, TV appearances) and c) events (press...
A number of activities is foreseen to be implemented vua a) online media (website, social media pages, newsletters, email blasts), b) traditional media (articles, TV appearances) and c) events (press conferences).
THALIA2018 Evaluation by lead TIF

Start month:1 - End month: 12

THALIA2018 will be evaluated internally by the Board of Directors and the Executive Director (the “Internal Evaluation Committee”) that will draft an Internal Evaluation Report (WA7.1) by M12. The...
THALIA2018 will be evaluated internally by the Board of Directors and the Executive Director (the “Internal Evaluation Committee”) that will draft an Internal Evaluation Report (WA7.1) by M12. The external evaluation of the work will be assigned to a third independent party that will deliver a comprehensive report in M12.