The centronuclear and myotubular myopathy community has taken part in Rare Disease Day for a number of years. On this and the pages below you can read about the event.
Rare Disease Day takes place annually on the last day of February and aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policymakers, researchers, health professionals and anyone who has an interest in rare diseases.
Since the first Rare Disease Day in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and over 80 countries now participate. The political momentum resulting from the day has also served for advocacy purposes, most notably the advancement of plans and policies for rare diseases in a number of countries.