In the news
International approaches to rare diseases
A new report from the European Union Committee of Experts on Rare Diseases (EUCERD), which sets out an overview of rare disease activities and policies across Europe, notes that the only EU member states with an established national strategy are France, Portugal, Greece, Bulgaria, Spain and the Czech Republic. However, several others including the UK (see previous news) are said to be in the process of creating one, and others have taken steps towards doing so.
A new community of interest has been set up in Switzerland with a view to producing a national strategy for rare diseases, comprising the Swiss Medical Association and Orphanet-Switzerland, along with patient groups, hospitals and pharmaceutical industry representatives. Together, they hope to overcome the barriers to good diagnosis and care for rare diseases that are exacerbated by a health system that is focused locally rather than nationally, by producing a unified national action plan.
Meanwhile, the first rare disease registry in China is said to be in need of international collaboration. The registry was established for patients with the genetic disorder osteogenesis imperfecta or brittle bone disease by the China Dolls Care and Support Association, which was set up to provide medical support and social care. There have now been calls for assistance from similar registries in other countries, to allow global compatibility.