Rare Diseases: A Public Health Priority In Europe
Rare diseases are often chronic, progressive, degenerative, life-threatening and disabling diseases.
Information is scarce and research is insufficient. People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support. Many patients with a rare disease are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles. There are between 6000 to 8000 rare diseases, a disease is defined as rare in Europe when it affects less than 1 in 2000 citizens.
Promoted for the first time on the 29 February 2008 by Eurordis, the last day of February has been officially designated as International Rare Disease Day. The second International Rare Disease Day was on 28 February 2009. A variety of events, meetings and debates were organised in many countries with the main purpose to raise awareness of rare diseases and their impact on patient’s lives among the general public and key stakeholders.
To mark the European Rare Disease Day 2009, Commissioner for Health, Ms Androulla Vassiliou, hosted, on March 3 at the Berlaymont building in Brussels, the launch of the book “The voice of 12.000 patients”. The book, produced by Eurordis and co-funded by the European Commission, illustrates the experience and expectations of rare disease patients on diagnosis and care in Europe.
This book, Commissioner Vassiliou said in her welcoming speech, is an important step forward in our effort to raise awareness on rare diseases under the 'Europe for patients' umbrella campaign. In developing the European Commission proposal for an action in the field of rare diseases, a central aim has been to listen to what patients want and need, “To-day we hear loud and clear some of the voices of more than 30 million citizens with a rare disease. When I launched the Commission proposal last November, I said that we want to bring patients with rare diseases out of their shadows; this book “The voice of 12.000 patients” helps doing exactly that, I hope that the Rare Diseases Day will provide a platform for us all to hear these voices.”
Yann Le Cam, CEO of Eurordis, warmly thanked Commissioner Vassiliou for hosting the launch of the Eurordis book and for her strong commitment to promote RD as a public health on the European Agenda. Public health policy is not about bureaucracy and decision making process, he continued, it is about identification of citizen’s needs and expectations and taking action to address them. To do so decision-makers need to relay on data and this is the first merit of this Eurordis book. It allows one to go beyond anecdotes and it enables one to gather a huge amount of data and the real life experience and the expectation of people living with rare diseases to access diagnosis and care in Europe today.
As part of the Rare Disease Day campaign another important event took place on the same evening at the European Parliament. A dinner debate on Rare Diseases “Patient Care: A Public Affair” was hosted by Professor Antonios Trakatellis, Member of the Parliament and Rapporteur of the EU Parliament’s Opinion on the Proposal for a Council Recommendation on Rare Diseases and co-coordinated by Eurordis.
The debate was focused on the Commission Communication and a Proposal for a Council Recommendation on rare diseases adopted last November by the Commission, which will delineate national strategies in diagnosing, treating and caring for people with a rare disease in Europe. Prof. Trakatellis, Mr. Antoni Montserat, Head of the Information Unit, DG SANCO and Yann Le Cam of Eurordis, gave an overview of these important policy developments and of the main challenges and priorities of the Rare Disease Community in Europe.
IPOPI attended both events, representing the community of people with primary immunodeficiencies and hopefully making the voices of citizens with rare disorders louder.
Bianca Pizzera |
