Brussels, 04 March 2009
In support for the second annual Rare Disease Day, EuropaBio, the European Association for Bioindustries, highlights the key role that biotechnology has for the development of treatments for rare diseases. EuropaBio members continue to work to provide patients with rare disorders the same safety, efficacy and quality products as patients with more common diseases. Working with European regulatory and institutional bodies and patients’ organisations, EuropaBio and its members continue to call for greater awareness for this group of often forgotten patients.
To commemorate Rare Diseases Day, Eurordis, the European organisation for rare diseases, organised a dinner debate at the European Parliament bringing together a wide range of stakeholders, including EuropaBio, to discuss the proposed overall Community strategy to support Member States in performing research, diagnosing, treating and caring for rare diseases patients. The main objective of the Parliamentary debate was to raise awareness with EU policy makers about rare diseases and their impact on patients’ lives. The debate was organised in parallel with a series of events across Europe(1) and this year the events’ two main goals are to firmly plant Rare Diseases in people’s minds as a public health priority, and to underline the need for National Centres of Expertise. Greek MEP Professor Antonios Trakatellis, the rapporteur on the Council Recommendations on Rare Diseases currently on the legislative agenda, also took the lead in organizing the dinner debate.
Following the conclusions of the High Level Pharmaceutical Forum(2) EuropaBio is strongly committed to improve timely and equitable access to orphan medicinal products for all EU rare disease patients.
Including between 5,000 and 7,000 disorders, these conditions affect by definition less and in many cases much less than 1 in 2000 EU-citizens. Despite this, the number of conditions is estimated to affect up to 29 million Europeans(3). With 70-80% of rare diseases having a genetic link(4), the unraveling of the human genome over the past decade has helped understanding of these diseases and improved care for patients suffering from them. Biotechnology is instrumental in identifying the underlying genetic causes of these conditions and in developing treatments for them.
“Biotechnology provides powerful tools to develop diagnostics and treatments for rare diseases and EuropaBio is strongly supportive of European Rare Disease Day 2009. As a result of the focus that Rare Disease Day provides, we hope that national healthcare services will improve the availability and quality of diagnosis, treatment and care for rare disease patients in Europe as well as support more research in this field”, says Willy de Greef, Secretary General of EuropaBio.
Notes to the Editor
(3) The voice of 12,000 Patients: Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe’. 2009. Eurordis. Paris
(4) Torrent-Farnell J. Notes at The Management Forum seminar on Orphan Drug Designation: Current Status in the EU. November 2001. London
About European Rare Disease Day
Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information about these conditions is scarce and research is insufficient. People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support. Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles. Rare Diseases Day calls attention to the plight of these patients. The European Rare Diseases Day is organized by Eurordis, the European organisation for rare diseases and there are many activities driven by national patients’ organizations in the Member States in parallel with the European event. This year there was also the launch of the book “The Voice of 12,000 Patients”, on 28 February 2009. The book, published by EURORDIS, presents the conclusions of surveys on the experience and expectations on diagnoses and access to care of 12,000 patients representing 18 rare diseases and 24 European countries.
For further information, please contact
Healthcare Manager, EuropaBio
EuropaBio is the European Association for Bioindustries, solely and uniquely bringing together bioscience companies from all fields of research and development, testing, manufacturing and distribution of biotechnology products. It has 68 corporate and 5 associated members, 4 BioRegions and 25 national biotechnology associations representing some 1800 small and medium sized enterprises involved in research.