The main objective of Rare Disease Day is 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 and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
Originating in Europe, the day has become a worldwide phenomenon, with more than 80 countries participating in 2016. Events associated with the day are organised by different organisations working on a local or national level to raise the level of awareness for the rare disease community within their countries.
What is a rare disease?
A rare disease or disorder is defined differently in different countries around the world. For example in the USA a disease or disorder is defined as rare if it affects fewer than 200,000 Americans at any given time while in Europe a rare disease is so named when it affects less than 1 in 2000 Europeans.
Certain diseases and disorders may affect a handful of people while others may touch the lives of as many as 245,000. It is estimated that as many as 30 million people may be affected by one of over 6000 existing rare disease in Europe.
- 80% of rare diseases have identified genetic origins whilst others are the result of infections, allergies and environmental causes, or are degenerative and proliferative.
- 50% of rare diseases affect children.
Theme – Research
The theme for 2017 is research and the slogan for the year is ‘With research, possibilities are limitless’. Research is key and brings hope to the millions of people living with a rare disease across the world and their families. The theme highlights the difficulties experienced by millions of patients who live without a definite diagnosis or knowing there is no available or effective treatment for their rare disease or disorder. Research can lead to the identification of previously unknown diseases and can increase understanding of the same. It enables doctors to give a correct diagnosis and provide information to patients about their disease. Research can also lead to the development of new treatments and in some cases, even a cure.
Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
Today, 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 can’t stop there.
All information for this article was taken from the Rare Disease Day website which has a wealth of information on the day and on how you and any organisation can be involved in future events.
This article was originally published on the International Children’s edition of ehospice.