Rare Disease Day at Hannover Medical School (MHH)
Author
Marion Deter, as published in Alpha1 Journal 1-2019
Introducing ORPHANET
On February 28, 2019, a bright, sunny day, the Orphanet Team Germany, in cooperation with the Center for Rare Diseases (ZSE) at Hannover Medical School (MHH), organized a "Rare Disease Day Symposium." We were able to present ourselves at an information booth. Approximately 40 organizations were represented, leading to a very lively and informative exchange, complemented by interesting presentations.
Orphanet also introduced itself: It consists of a consortium of 40 partner countries (within and outside Europe). The portal features information on various rare diseases, presented in different languages. It compiles relevant documents, publications, and other valuable information on rare diseases. International expert centers and patient organizations are also listed there.
Marion Deter, as published in Alpha1 Journal 1-2019.
