Today is Rare Disease Day 2017! Launched by EURORDIS and its Council of National Alliances in 2008, Rare Disease Day has, and continues to collaborate with organisations around the world, through hosting events, creating media coverage, and ultimately raising awareness of rare diseases and the impact of such diseases on the lives of patients and their families.
Taking place on the last day of February each year, Rare Disease Day is led by patients and patient organisations around the world, serving to generate the political and societal momentum necessary to increase awareness and funding availability for research and care. In the past, Rare Disease Day has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
What are rare diseases?
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000 people. In the United States of America, a disease or disorder is defined as rare when it affects fewer than 200,000 Americans at any given time. Within the European Union (EU), one rare disease may affect only a handful of patients, and another may affect as many as 245,000. In the EU, As many as 30 million people may be affected by one of over 6000 existing rare diseases.
80% of rare diseases have identified genetic origins, while others are the result of bacterial or viral infections, allergies and environmental causes. Some are degenerative, proliferative. 50% of rare diseases also affect children and young people.
The importance of rare disease research
Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. On Tuesday 28 February 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases. Over the last few decades, funds dedicated to rare disease research have increased, but it’s still not enough.
Therefore, Rare Disease Day 2017 is an opportunity to call upon researchers, universities, organisations, policy makers and health care professionals to do more research, in addition to making them more aware of the importance of research for the rare disease community. People living with rare diseases, their families, patient organisations, politicians, carers, health care professionals, researchers and industry will also come together to raise awareness of rare diseases through thousands of events around the globe.
It’s also an opportunity to recognise the crucial role that patients and their families play in research. Patient involvement in research has resulted in more research, which is better targeted to the needs of patients. Patients no longer solely reap the benefits of research; they are empowered and valued partners from the beginning to the end of the research process.
For more information about Rare Disease Day 2017, click here!
Source: Rare Disease Day 2017