EULAR orphan disease Programme
The EULAR Orphan Disease Programme (ODP) on systemic sclerosis
In 2007, EULAR defined its strategic objectives for the period 2008-2012. As part of this strategy, the Executive Committee decided to launch a 4-year orphan disease programme focusing on systemic sclerosis to strengthen its activities in areas that are currently less prioritized.
The EULAR ODP on systemic sclerosis has two focus areas, patho-physiology and/or therapy, and multi-centre projects will be encouraged. The programme is designed to fund a number of research projects (total budget of approx. 700, 000 euros per year). Projects selected for funding will need to pass a systematic evaluation process under the control of an independent Grant Advisory Council (GAC). All project proposals will be peer reviewed.
With the ODP, EULAR aims to make a leap forward in the research of pathophysiology and therapy of systemic sclerosis. It aims to fund research projects that achieve real benefit for patients; accordingly, financially supported research will need to demonstrate tangible results in that respect. Overall, the programme aims to establish EULAR as an organisation of competence and global reputation for this, and possibly other, orphan diseases in rheumatology.
Start of the programme was January 2009, when the first call for project proposals was issued. The programme was open to the entire global scientific community; however, only applications where the Principal Investigator is based in Europe were considered.
Observational study of treatment outcome in early diffuse cutaneous systemic sclerosis
Regulatory networks underlying the pathogenesis of systemic sclerosis: Molecular correlates and determinants of outcome
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orphan diseases what are orphan diseases?
"Orphan disease" is a description assigned to one of the more than 6,000 rare diseases that affect relatively small numbers of patients.