A year of partnership
We are very pleased to present the first-year anniversary issue of OrphaNews Europe. The past twelve months have witnessed a flurry of rare disease activities: breakthroughs in research and development, advances in regulations, new medicinal products available on the market, individual countries developing rare diseases policies and programmes, and international databases, registries and patient groups springing up for true partnership and collaboration. It is an honour for OrphaNews Europe to record these developments as they unfold and present them to our readers.
Thank you to the hundreds of readers who took the time to respond to our Reader Survey sent out last month. Your feedback will help us streamline efforts to better meet your needs. We received replies from 28 individual countries across the globe. Some of you took extra time to write your thoughts and suggestions – we are studying these carefully and will try to incorporate your ideas into future newsletters. We are extremely happy to note the general satisfaction with OrphaNews Europe and the degree to which our readers find it useful and interesting. There is, of course, always room for improvement, and we hope to evolve in response to your needs. Considering the majority of survey respondents (73%) who chose “Research Developments” as amongst the sections of the newsletter they follow most closely, an immediate response on our part will be to include brief summaries of all newly published research articles in the areas of new diseases and syndromes, new rare disease genes, and new clinical and basic research, starting in the Autumn. If you haven’t had time to return your survey, it is never too late. Your ideas and opinions will always be taken into account.