Rare Disease Days - 10 years on still going strong
Today Rare Disease Day will be celebrated around the world. In its 10th year, it has become an iconic day, to understand and appreciate the struggles of rare disease patients and create awareness in the community. Throughout the world, people living with a rare disease and their families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases. It is also a day of reflection to acknowledge how much more can be achieved if we work collectively.
The Rare Disease Day slogan this year is 'With research, possibilities are limitless'. Active and collaborative research is essential not only to find new drugs and targets for these diseases but also to unravel the biological mechanisms of the disease in order to understand the progression of the disease. In addition, social research is important to provide support and adequate care to patients and caregivers. Thus a sustained effort towards more and better research in rare diseases is essential to improve the lives of rare disease patients. Patient involvement has pushed for more research as they have been instrumental in advocating, funding and participating in research projects assisting or as subjects of clinical trial. For this Rare Disease Day, rare disease stakeholders all over the world are raising awareness on how everyone can be involved in this process.
Organised by EURORDIS, events are unfolding all over the world and participants are prepping for a show of hands in solidarity with rare disease patients all over. If you haven’t already done so, you can visit the Rare Disease Day website and find an activity taking place near you today. Your participation could make the difference! This year there are over 90 countries participating with Iran, Botswana, Nigeria, Senegral and Sudan being the new participants. From Australia to Zimbabwe, there are events planned for dissemination of information, marching to show solidarity with rare disease patients and a show of hands to mark the day. Additionally, several policy and press events as well as symposiums have taken place as a prelude to Rare Disease Day.
OrphaNews International wishes you an eventful and productive day and thank all the groups that are making an effort to put rare diseases on the agenda of topics that merit awareness, action and funding.
This year’s video for Rare Disease Day (see below) has had more than 10,000 views!
