Rare Disease Day 2017 sets focus on Research
February 28, 2017
Since 2008, the Rare Disease Day is organized annually by the European Organisation for Rare Diseases (EURORDIS). The aim is to raise awareness for rare diseases and improve access to treatment and medical representation for patients and their families. Starting out as a European campaign, the Rare Disease Day quickly became a global phenomenon that now mobilizes people in over 80 countries.
The 10th edition of the Rare Disease Day will be held on February 28, 2017. Numerous activities and events are planned by patients and organisations around that special day.
In 2017, the organisers set the focus on the theme Research to highlight the importance of research for providing patients with answers and solutions, in the form of a treatment, cure or improved care.
This focus is directly in line with the objectives of MYOCURE as the project aims to advance the development of new therapies for patients with rare muscle diseases. In particular, MYOCURE will impact directly on an estimated 20.000 people in the EU suffering from myotubular myopathy (MTM) or glycogen storage disorder type II (GSD II).
Rare Disease Day is open to all. Find out how to get involved here.