In 2009 Health Ministers from each EU member state signed a European Council Recommendation that called on Member States to develop and implement strategies for the treatment and care of people living with rare diseases.
Currently many European countries have no strategic plan for delivering the best course of treatment and support for all patients with rare conditions – including alpha1 antitrypsin deficiency.
EUROPLAN is a three year project which aims to provide recommendations, best practices, case studies and indicators to help each EU Member State develop their strategy for rare diseases. Over 25 countries are taking part and the findings will go back to the European Commission as part of their role in overseeing Member States’ actions in improving services for rare diseases.
In each country an umbrella organisation for rare diseases is organising a conference for all people interested in better health care. In the UK this is the Genetic Alliance UK.
The conference will be held in Manchester on the 16th of November 2011.
A final report from the conference is available here.