Rare Disease Blogs
This blog is a joint EURORDIS/NORD project whose aim it is to bring together key international opinion leaders in the fields of rare diseases & orphan drugs in order to promote debate and foster interaction with members of the public.
Bloggers are drawn from a broad range of stakeholders and interests the rare disease community including patient advocates, rare disease national and international patient federations, regulators, public policy decision makers, national health authorities and research.
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Mar 07, 12 02:49AMI’ve just been reading through the consultation document for the UK plan on rare diseases. Despite being well written, it’s rather disappointing. The UK hasn’t yet had a plan or a st rategy...
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Feb 27, 12 06:00AMWhen EURORDIS first created Rare Disease Day in 2008, my first reaction was a bit skeptical. There are so many awareness days. I wasn’t sure the world needed one more…or that a day to f ocus...
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Feb 27, 12 02:39AMAs we celebrate the International Rare Disease Day 2012 we are turning rare diseases into an international movement as well as into an international public health priority. These are critical, u navoidable...
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Feb 16, 12 11:04AMU.S. Senator Kay Hagan (NC) has introduced proposed legislation that NORD believes could help rare disease patients by encouraging the development of safe, effective treatments. It is known as the Tr ansforming...
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Nov 02, 11 05:06AMLive from Tbilisi. I am at the 2nd South Caucasia Conference on Rare Diseases and Orphan Drugs. This conference organised by our our Georgian member (Georgian Foundation for Genetic and Rar e...
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Nov 02, 11 04:42AMThe 1st US Conference on Rare Diseases and Orphan Products, co-organised by NORD (National Organization for Rare Disorders, USA) and the DIA (Drug Information Association), took place in Washington DC from...
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Oct 05, 11 08:26AMAfter the impact on Europe of the US financial crisis two years ago, the EU is now shaken by a new crisis, a crisis of the Euro spurred by the public deficit of Member states. The future of EU is at s take...
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Oct 05, 11 03:25AMI came home late from London last night. We’d just had a brainstorm with a group of friends to think about how to build a strong rare disease movement in the UK. As you’ll see from my prev ious...
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Jul 22, 11 07:56AMYesterday, I was not happy. I’d been talking to a major funder, trying to find out more about whether we could apply for funding for our fast moving scientific research and upcoming clinical tri als...
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Jun 13, 11 01:18PMA recent article published in the Journal of the American Medical Association (JAMA) discussed a comparison of clinical trials for orphan vs. non-orphan oncology drugs. The article questioned wh ether...
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