TIF Collaborations Common Goals between the Thalassaemia International Federation and GG2020

Carsten W. LedererThe Cyprus Institute of Neurology and Genetics

The Cyprus School of Molecular MedicineLederer@cing.ac.cy

On behalf of the Thalassaemia International Federation

www.thalassaemia.org.cy

The Cyprus Institute of Neurology and Genetics

UNESCO HeadquartersParis, France

30 – 31st May 2016

Human Variome Project Consortium

6th Biennial Meeting GG2020 Fringe Meeting

2Global Reach

Full membership 117 voting and general national thalassaemia associations 56 countries

Including associate membership 187 members 61 countries

3Aims

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

4Five Pillars of Work

1 21. 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

5Five 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 issues5. Projects

Participation in collaborative projects towards the improvement of care

1 52 43

Patient’s Voice

6Lobbying 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?

7Advocacy 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

Research

Care

Care

Research

8Advocacy 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

9Involvement in EuroBloodNetERN Establishment

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

10Acknowledgements: TIF Staff