International Group Has Ambitious Goal to Tackle All Rare Diseases, Including Mesothelioma, by 2020
The U.S. National Institutes of Health (NIH) and the European Commission have joined forces to form the International Rare Disease Research Consortium (IRDiRC). Hoping to maximize their resources as well as to share and coordinate research globally, their goal is to tackle the problems encountered by people worldwide diagnosed with a rare disease. Some of the conditions designated as rare by the NIH include mesothelioma, ulcerative colitis, Alzheimer’s disease, colorectal cancer, prostate cancer and close to 7,000 other cancers and diseases.
In the United States an orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time. Rare disease sufferers often lack medical resources, including specialists, treatments, and even medical facilities, to manage their condition. Like mesothelioma, an asbestos-related cancer, many of these illnesses afflict so few people that researchers and pharmaceutical companies do not find it beneficial to expend the time, effort or money to find treatments and cures.
Realizing that the diagnosis and treatment for patients affected by rare diseases is challenging, the IRDiRC issued a statement committing “to the development of 200 new rare disease treatments by the year 2020 and the development of diagnostics for all rare disorders.”
The consortium members which includes members from research funders, patient advocacy groups, researchers, industry and regulatory agencies stated that “this ambitious vision will be realized though an unprecedented cooperation at the international level.”
This unprecedented effort brings great hope and relief to mesothelioma patients and the millions of others affected by rare diseases. Research for many of these diseases has been going on for decades, and the prospect of finding new treatments for 200 of these diseases can bring the medical breakthroughs needed to treat hundreds more.
The Consortium invites public and private partners with shared commitments from across the globe to “join our efforts and alleviate the suffering of individuals affected by diseases for which today there are no treatments available.” Their next step is to develop the scientific and policy framework to guide the research activities and foster collaboration among the stakeholders.
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