BRUSSELS, Feb. 28 (Xinhua) -- The European Commission is launching a new online knowledge-sharing platform to support better diagnosis and treatment for those who suffer from rare disease, it said in a statement Thursday to mark the World Rare Disease Day.
The new European Platform on Rare Diseases Registration is committed to establishing an European Union (EU)-wide database on patients with specific conditions. It will support quality research to enhance diagnosis and treatment outcomes.
A rare disease can affect someone from birth, like cystic fibrosis, or it can develop later in life, like Huntington's disease. Currently, there are more than 30 million Europeans living with a rare disease, according to the Commission, said the statement.
By providing EU standards for data collection and data sharing, the platform will for the first time make it possible to search for data of rare disease patients. It can also foster the critical mass of patient data needed to trigger pharmacological, translational or research studies. Thus, patients don't have to suffer alone with little or no hope of being cured.
Vytenis Andriukaitis, Commissioner for Health and Food Safety, said: "The new platform will address the fragmentation of rare diseases data, promote the interoperability of existing registries and will help create new ones."
The World Rare Disease Day is observed on the last day of February each year.
