Research brings hope to people living with a rare disease
In the hopes of raising awareness on rare diseases, World Rare Disease Day is a campaign that thrives on improving access to treatment and medical assistance for individuals with rare diseases and their families. This special day falls on the last day of February every year – which is either the 28th or 29th.
A rare disease – also referred to as an orphan disease, is any disease that affects a small percentage of the population. Most rare diseases are genetic, and are present throughout a person’s life, even if there are no immediate symptoms at an early age.
This year’s theme – which is also the 10th edition of World Rare Disease Day, focuses on research that may bring hope to people living with a rare disease. This would mean providing patients with the answers and solutions they need, whether it is a treatment, cure or improved care in the future.
Facts and statistics on rare diseases
- There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day, worldwide.
- 80% of rare diseases are caused by faulty genes.
- If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.
- Approximately 50% of the people worldwide who are affected by rare diseases are children.
- 30% of children in the world with rare disease will not live to see their 5th birthday
- Approximately 50% of rare diseases do not have a disease-specific foundation supporting or researching them.
Join and support our local Malaysian Rare Disorders Society by logging on to their website at http://www.mrds.org.my/join-us/.