An overview of the potential for collaboration between the Thalassaemina International Federation and GG2020

1. TIF Collaborations
Common Goals between the Thalassaemia
International Federation and GG2020
Carsten W. Lederer
The Cyprus Institute of Neurology and Genetics
The Cyprus School of Molecular Medicine
Lederer@cing.ac.cy
On behalf of the
Thalassaemia International Federation
www.thalassaemia.org.cy
The Cyprus
Institute of
Neurology
and Genetics
UNESCO Headquarters
Paris, France
30 – 31st May 2016
Human Variome Project
Consortium
6th Biennial Meeting
GG2020 Fringe Meeting

2. Global Reach
 Full membership
 117 voting and general national thalassaemia associations
 56 countries
 Including associate membership
 187 members
 61 countries
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3. Aims
 Implementation of national disease-specific programmes for thalassaemia
in every country
 Disease prevention
 Disease management
 Establishment of quality care for thalassaemia
 Patient-centred & for all thalassaemia patients
 Equal access worldwide
 Inclusion of sickle-cell disease and other related health-care issues
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4. Five Pillars of Work
1 2
1. Communications
 TIF Magazine
 E-Newsletter
 Social Media and website
 Board Member’s Update
2. Education
 TIF events from local to international level
 TIF publications
 Development of MSc programmes in haemoglobin disorders
 Development of “expert patients’/parents’” programmes
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5. Five Pillars of Work
3. E-Education
 Empowerment through access to education
 Digital Library app
 Other tools and platforms planned
4. Networking
 Lobbying at all levels
 Geographically
 In the hierarchy of stakeholders
 Publication of position papers on critical issues
5. Projects
 Participation in collaborative projects
towards the improvement of care
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Patient’s Voice
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6. Lobbying for Change
 Official Relations with WHO
 Ambassadors for thalassaemia patients at all levels of stakeholders
 Health authorities, clinicians, patient-support associations, other NGOs
 Targeting patient experts and making patients experts
 Sustainability: maintain the momentum through clinicians & patients
 Current focus
 Convincing health authorities that HPGs deserve equal focus to other
problems
 In absolute terms, hunger, thirst and infectious diseases rate more highly
 All three hit the chronically ill hardest
 In relative terms, HPG prevention is of greater or equal benefit
(cost/benefit analysis)
 Synergy with GG2020
 Perfect overlap of TIF and GG2020 key messages
 TIF to lobby for (inexpensive) resolution of bureaucratic hurdles to data
collection?
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7. Advocacy for Care
 Recent target countries
 China
 Turkey
 Pakistan
 India
 Message
 Investment in
 Provision of health care
 Building-up of infrastructure
 Care requirements should guide research
 Currently research interests guide clinical service provision
 Synergy with GG2020
 Repositioning of HVP towards clinical application of knowledge
 Beyond BRCA Challenge: focus on establishment of care infrastructures
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Research
Care
Care
Research

8. Advocacy for Equality
 Homogeneous healthcare provision
 Equality of care in developed and developing countries
 Nationwide equality of care in for each country
 Current status quo in most LMCs
 High-level service provision in local centres
 Societal and geographic gaps nationally
 Access to sophisticated facilities and services at a premium
 Survival of the richest
 Synergy with GG2020
 Focus on LMCs
 Nationwide mapping of variants means nationwide coverage
 Establishment of reference centres for nationwide emulation (and referral)
 GG2020 tripartite focus on thalassaemia, SCD and G6PDD
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9. Involvement in EuroBloodNet
ERN Establishment
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 Harmonising prevention and treatment in Europe
 Apply EU criteria to tackle rare diseases requiring specialised care
 Serve as research and knowledge centres treating patients from other EU countries
 Ensure the availability of treatment facilities where necessary
 Synergy with GG2020
 ERN centres are potent European partners
 ERN criteria as models as targets for GG2020 partners
http://ec.europa.eu/health/rare_diseases/european_reference_networks/index_en.htm
http://ec.europa.eu/health/rare_diseases/european_reference_networks/erf/index_en.htm
http://www.thalassaemia.org.cy/newsletters/website/2016/04-April.html

10. Acknowledgements: TIF Staff
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