A new tool has joined the arsenal of instruments geared toward raising awareness and discussing the issues pertinent to rare diseases and treatments. Rare Disease Blogs is billed as offering “international opinion on rare diseases and orphan drugs” and is available to the rare disease community and anyone else interested in learning more about the complex issues facing rare disease patients and their caregivers. A transatlantic initiative created jointly by the European Organisation for Rare Disorders (Eurordis) and the USA’s National Organization for Rare Disorders (NORD), the new website has some stellar bloggers onboard – including researchers, policy makers, and patient organisation representatives. The founders hope to increase the involvement of regulators, as well as EMEA patient representative bloggers, in order to enhance the direct exchange of information, experience and opinions within the rare disease community, involving all stakeholders at the international level. Readers are invited to comment on any of the articles, which are divided into two main categories: rare diseases and orphan drugs. Neatly designed and nicely illustrated, the Rare Disease Blogs offer one more way of staying abreast of news in the field”.
This is an new initiative. I am certain those of us involved in the field of rare diseases will find this of interest. The new Rare Disease Blog http://www.rarediseaseblogs.net/