IRDiRC dreams bigger

Public funding roundup 3Q17

After presiding over rapid growth in the global effort to diagnose and treat rare diseases over the past six years, the International Rare Diseases Research Consortium (IRDiRC) announced three new goals, one of which is finding new therapies for 1,000 indications.

In 2011, NIH and the European Commission created the consortium as a global coalition that has now grown to 52 government and non-profit funding bodies, biotech and pharmaceutical companies, patient advocacy groups and individual researchers. IRDiRC's founders wanted a goal-oriented collaboration like the Human Genome Project, but sought to also include companies such as Pfizer Inc. and Roche that could aid in drug development.

Individual funders, who have collectively spent over $2 billion on rare disease research since the consortium's launch, adopted changes recommended through IRDiRC's guidelines and policies on a series of topics impacting research and development.

Data on rare disease therapeutics and diagnostics are tracked by IRDiRC member Orphanet, an initiative coordinated by Institut National de la Santé et de la Recherche Médicale (INSERM) with European Commission support.

IRDiRC's original goal was for the rare disease community to get 200 new therapies approved in its first decade, a milestone it hit earlier this year.

Consequently, the consortium has decided to set new, more ambitious goals, IRDiRC Chair Christopher Austin told BioCentury. According to Austin, who is also director of NIH's National Center for Advancing Translational Sciences (NCATS), IRDiRC estimates that at current rates 600 new orphan medicinal products will be available in the next decade.

IRDiRC wants to

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