As 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, unavoidable long term objective to sustain and boost national and regional dynamics as much as to enable global approaches when they are more relevant and [...]
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 [...]
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 [...]
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 [...]
No doubt, the EU Cross-Border Health Care Directive is a new important legislation to improve quality and access to health services for patients!
This policy lays down the basis of the future organisation of healthcare services in the European Union and grant new rights to patients to take advantage of being European citizens. When we will [...]
This decision is part of a significant reshuffle of responsibilities assigned to each Designated Commissionner in the Barosso II European College of Commissionners. For this decision to be implemented the new Commissionners need first to be approved by the European Parliament in January / February. This transfer is an important change. All [...]
The creation of this Committee is one of the well expected concrete implementing measures of the adoption of the Commission Communication on Rare Diseases in November 2008. The publication of the decision was already expected since July 2009, however other priorities like the EU strategy to address the challenges of the H1N1 flu epidemic [...]
The European Union and its Member States are faced with the challenge of an emerging field in medicine: personalised medicine. Therapeutic interventions, and in particular medicinal products, are increasingly intended for well targeted and smaller patient populations.
These interventions are usually intended for the prevention, diagnosis, treatment, cure or long term management of severe, debilitating, life-threatening [...]
