There’s good news from the world of medical research for rare diseases. Last month, the National Organization for Rare Disorders (NORD) and other patient advocates participated in the launch in Washington DC of a new international consortium to promote global collaboration on rare diseases and orphan products. The International Rare Disease Research Consortium (IRDiRC) has set some ambitious goals, including the development of 200 new rare disease treatments by the year 2020 and the development of diagnostics for all rare diseases.
Here’s what OrphaNews had to say about it: ‘Formed under the auspices of the US National Institutes of Health (NIH) and the European Commission, the IRDiRC will involve “an unprecedented cooperation at the international level” in order to fulfil the ambitious goals defined. As such, public and private stakeholders from all over the world are invited to join the fight to alleviate the suffering of rare disease patients and their loved ones. Participants included representatives from Canada, and individual European countries (France, Germany, Italy, Spain, and the UK, amongst others).’
Genetic Alliance president and CEO, Sharon Terry, who participated in the three day meeting, commented on the Genetic Alliance website that, ‘The energy generated by having concrete goals, with the commitment and leadership of major international funders throughout the entire meeting, was palpable. Now it is time to roll up our sleeves as a community, and focus our energy getting the business plan in place to succeed.’
I think this is excellent news. There’s not enough research being done for rare disease treatments, with barely a few hundred diseases with treatments out of the total of 7,000 rare diseases. So if you’re a rare disease patient group, keep an eye on this consortium and make sure you’re ready when it releases its call for proposals.