New Delhi: Living with a rare disease can be hauntingly painful. The fact is that for patients and their families, every day is a challenging day that may be difficult for others to understand - from wondering how you or your loved ones will manage life to the feeling of being alone.
With most rare diseases having no cure or even effective treatment available, living with or having someone who has a rare disease can be extremely traumatic both physically and mentally.
In Europe, a disease or disorder is defined as rare when it affects fewer than 1 in 2000. Whereas, a disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
As per a report from rarediseaseday.org, 50% of rare diseases affect children.
In order to raise awareness about rare diseases and their impact on patients and their families' lives, Rare Disease Day is observed on the last day of February each year.
The theme for this year's Rare Disease Day is 'research' that brings hope to the millions of people living with a rare disease across the world and their families.
Research on rare diseases is crucial at the moment to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.
The day 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.
This year on 28 February 2017, Tuesday, 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.
Rare Disease Day was first launched by EURORDIS on 29 February, 2008, in numerous European nations and in Canada through the Canadian Organization for Rare Disorders.