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The objective
Rare disease activities within Epposi are structured as the Epposi Rare Diseases Interest Group (RDIG).
Given the cross-cutting impact of the Interest Group, its main mandate will be to:
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Suggest project topics (focused on medium- to long-term impact) and possible collaborative programme partners
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To address rare disease issues horizontally across Epposi's existing Advanced Innovation Programmes (AIPs). In particular, how and where to include rare disease elements in the design and planning of the outline model for AIP-INNO, AIP-HTA and as a control group in the 2012 roll-out of AIP-CCM.
In 2012, Epposi will also work vertically to address the specificity of rare disease challenges from a multi-stakeholder perspective on a case-by-case project basis. A minimum of two rare disease policy areas will be investigated for discrete pilot projects, such as the impact of ageing (rare disease patients who go on to develop age-related chronic conditions and how to diagnose and manage these co-morbidities) and on neo-natal screening.
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Key Documents
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| Download the progress report from Stakeholder Day (April 2012) |
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| Patient Organisations |
Science, Academia & Public Administrations |
Industry and Payer Community |
| ECPC (European Cancer Patient Coalition) |
EORTC (European Organisation for Research and Treatment of Cancer) |
Abbott
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| EFCNI( European Foundation for the Care of Newborn Infants) |
ESHG (European Society of Human Genetics)
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EDMA (European Diagnostic Manufacturers Association) |
| EGAN (European Genetic Alliances’ Network), Genetic Alliance UK |
SPHINX/The Amsterdam Lysosome Center
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GSK |
| EHC (European Haemophilia Consortium) |
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PPTA |
| EURORDIS (Rare Diseases Europe) |
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Shire |
| IPOPI (International Patient Organisation for Primary Immunodeficiencies) |
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| Retina Europe/Fighting Blindness |
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TIF (Thalassaemia International Federation
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WFIP (World Federation of Incontinent Patients)
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Programmes 
