Posts by Anneliene Jonker

European Medicines Agency releases fr...

European Medicines Agency releases framework and action plan for increased collaboration with academia

In its endeavor to further interactions with the academic community, the European Medicines Agency (EMA) has recently presented a framework that formalizes increased collaboration as well as an action plan to do so. They have also introduced a web page for academia which provides up-to-date information on the EMA and academia collaboration. The EMA have […]

Tell OECD how health systems can impr...

Tell OECD how health systems can improve sustainable access to innovative pharmaceutical therapies

The OECD is undertaking an international stakeholder dialogue to improve patient access to innovative pharmaceutical treatments and ensure the sustainability of health spending as well as continued innovation that meets patient needs. In this capacity, the OECD is inviting submissions to identify issues with the current system, to understand which topics are of most importance […]

Rare disease policy in 11 countries: ...

Rare disease policy in 11 countries: an analysis

The national rare disease policy in 11 countries have been compared and contrasted in an article published in the Orphanet Journal of Rare Diseases. The authors evaluated the rare disease policy landscape in Germany, France, the United Kingdom, Canada, Bulgaria, Turkey, Argentina, Mexico, Brazil, China, and Taiwan across five key dimensions. Highlights are mentioned below: […]

Risky business? Rare disease patients...

Risky business? Rare disease patients and caregivers willing to endure certain side-effects for better drug response

An article published in the Orphanet Journal of Rare Diseases discusses how rare disease patients and caregivers make benefit-risk assessments for therapeutic options that may be potentially available to them. The survey conducted by the authors show that when faced with a hypothetical treatment, treatments that have the highest chance of working were given the […]

European Reference Networks: a new co...

European Reference Networks: a new concept came to reality

The 3rd official European Reference Network (ERN) conference took place in Vilnius, Lithuania, on the 9th of March. The following day was dedicated to the kick-off meetings for the 24 thematic European Reference Networks (ERNs). This was a major event, involving approximately 600 delegates, and was organised under the auspices of the President of the […]

Report of the inauguration of the NGO...

Report of the inauguration of the NGO committee for rare diseases

EURORDIS-Rare Diseases Europe and the Ågrenska Foundation of Sweden, co-founders of the NGO Committee for Rare Diseases – a Substantive Committee of CoNGO  has published the Report from the inauguration of the NGO Committee for Rare Diseases.The report consists of the conclusions of this event which is now available online. The launch of the NGO Committee for Rare Diseases […]