Rare diseases go beyond borders – so should research and treatment
Today marks the sixth international Rare Disease Day® coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries, as well as many other organisations from around the world. The theme of Rare Disease Day® 2013 is “Rare Diseases without Borders”.
A rare disease is a life-threatening or chronically debilitating condition that affects no more than 5 in 10,000 people in the EU. Between 5,000 and 8,000 such diseases exist today. Although most of these rare diseases are genetic, serious, chronic and debilitating, patients and their families should not feel isolated by their condition. These diseases often affect people in similar ways. Reaching out across borders can help patients, families and carers find common solutions and remind them they are not alone.
The EU’s Orphan Regulation, unanimously adopted by the European Parliament in 1999, stated that “Patients suffering from rare conditions should be entitled to the same quality of treatment as other patients”. And this year is a key year in taking another important step forward, because all European governments have committed to elaborate and adopt a National Plan or National Strategy for treating Rare Diseases by the end of 2013. This governmental commitment should ensure that people suffering from rare diseases can have access to the most effective diagnosis, treatment and care.
It is important for society to ensure that no patient is left behind, just because they have a disease that is rare, or is less well-known. Many of the patients affected are children. Without treatment, many will die or will not be able to live happy and healthy lives.
Many of EuropaBio's 42 healthcare member companies are researching and developing orphan medicines to address the needs of rare disease patients in Europe and beyond. More needs to be done to improve the level of information and attention given to these diseases that affect relatively few patients in often in highly debilitating ways. In this context, EuropaBio calls for swift implementation of the 2009 EU Council Recommendation, which stated that, by the end of 2013, all EU Member States should establish national strategies to ensure that patients have access to high quality care, including diagnostics, treatments, rehabilitation for those living with rare diseases and,
if possible, access to safe and effective orphan drugs.
EuropaBio is the European Association for Bioindustries, bringing together bioscience companies from all fields of research and development, testing, manufacturing and distribution of biotechnology products. It has 56 corporate members, 14 associate members and Bio Regions and 19 National Biotechnology Associations- representing some 1800 small and medium sized enterprises across Europe.
For further information, please contact:
Communications Manager EuropaBio
Phone: +32 (0) 2 739 1173
GSM: +32 (0) 478 680 301