Editor's choices
Report from Washington. The 1st US Conference on Rare Diseases and Orphan Products.
The 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 11 – 13 October 2011. Organised in partnership with the FDA, NIH and EURORDIS, this first conference was a huge success, assembling over 250 [...]
Latest posts
Live from Tbilisi, Georgia
Live 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 Rare Diseases – GeRaD) together with the Alliance for Rare Diseases of the SOCO Foundation under the aupisces of EURORDIS thanks to the support of [...]
Report from Washington. The 1st US Conference on Rare Diseases and Orphan Products.
The 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 11 – 13 October 2011. Organised in partnership with the FDA, NIH and EURORDIS, this first conference was a huge success, assembling over 250 [...]
Rare diseases are an example of the need for more Europe today
After 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 stake, at least in its vision as a political space for peace, economic growth [...]
Do we need to rebrand rare diseases?
I 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 previous posts, I’m convinced that more can be done to create a mass social movement for rare diseases [...]
The system’s broken… and here’s how to fix it
Yesterday, 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 trials for Alkaptonuria (AKU), the rare genetic disease affecting my two sons. The funder was very helpful in explaining the different funding [...]
Categories
EU Rare Diseases Policy»
- Rare diseases are an example of the need for more Europe today
- The new EU Directive on Cross-Border Health Care introduce a new paradigm for the provision of healthcare services to rare diseases patients in Europe
- The EMEA is now called European Medicines Agency and the portfolio of pharmaceuticals is being transfered from DG Enterprise to DG Health & Consumers.
Blogger’s list
CEO EURORDIS
CEO, NORD- Director of the Office of Rare Diseases (ORD) at the NIH
- Director, FDA Office of Orphan Products Development
- President, EURORDIS
