PRESS RELEASE – May 6, 2010. Krakow is hosting the 5th European Conference on Rare Diseases 2010 Krakow (ECRD 2010 Krakow) on May 14th and 15th. A record number of 585 participants from 43 countries have registered to date. 34% participants are from Central & Eastern Europe: an unprecedented mobilisation.
A year after the adoption of a European strategy that calls upon Member States to implement national plans for rare diseases before the end of 2013, was adopted by the Council of Health Ministers of the EU, the ECRD will focus on the state of play in the different Member States. During the Conference, the European Commission will unveil the road map for the implementation of the European action in the field of rare diseases.Â
ECRD represents the most influential event in the world of rare diseases. It is a unique forum gathering all rare diseases, all European countries and all stakeholders (academics, health care professionals, industry, policy makers and patient representatives) to discuss key policies and actions to improve the lives of those affected.
This year, the event entitled, “From Policies to Effective Services for Patients”, will present the most recent rare disease initiatives in the fields of research, health care, information and social services. Hot topics such as access to genetic testing and to cross-border health care in an enlarged Europe will be debated. A special session on rare diseases in Eastern Europe will focus on centres of expertise and patient organisations’ activities to develop national plans and strategies on rare diseases.
Throughout the Conference, representatives from Polish health authorities and from Polish rare disease patient organisations will be available to answer your questions regarding their position and real life experiences. In addition, prestigious personalities such as: Mr Marek Twardowski, Undersecretary of State, Ministry of Health Poland, Dr Andrzej Ryś, Director of Pubic Health, European Commission, Prof Hans Georg Eichler, Senior Medical Officer, European Medicines Agency and Mr Terkel Andersen, President of EURORDIS and of the Danish Haemophilia Society, will present at the Conference.
ECRD is organised by The European Organisation for Rare Diseases (EURORDIS) in partnership with Rare Disorders Denmark, the National Health Institute (UK) and the Fundacio Doctor Robert, Autonomous University of Barcelona. It is primarily supported by the Public Health Programme of the European Commission, co-funded by CSL Behring, Novartis and Sigma Tau, with additional sponsorship from 10 other companies.
To see the Programme and for more information, visit: www.rare-diseases.eu
Venue
Auditorium Maximum
Jagiellonian University
Krupnicza Street 33, Krakow
Press contact:
Paloma Tejada
Communications Manager
EURORDIS
Tel. 33 (1) 56.53.52.61
e-mail: paloma.tejada (at) eurordis.org
Rare Diseases
A rare disease is considered as that when it affects less than one in 2000 people. Rare diseases are chronic, progressive, degenerative, and of the life-threatening. There is no cure today for the 6000 – 8000 rare diseases identified, of which 75% affect children. Due to their rareness information is scarce and research is insufficient. People affected by rare diseases face common challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support for everyday life. About 30 million people suffer from a rare disease in Europe today.
About EURORDIS
The European Organisation for Rare Diseases (EURORDIS) represents more than 400 rare disease organisations in 43 countries, covering more than 1,000 rare diseases. It is therefore the voice of the 30 million patients affected by rare diseases throughout Europe.
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. It is supported by its members and by the French Muscular Dystrophy Association (AFM), the European Commission, and corporate foundations and the health industry. EURORDIS was founded in 1997. More information on: www.eurordis.org
