Posted - February 2020 in HSPRF News
29 February 2020
On the rarest of rare days, 29 February, which occurs just once every four years, there is growing recognition globally of the thousands of recognised rare diseases; of the hundreds of millions of people who have them; of the enormous and devastating impact on individuals, families, society and the economy; and of the dire need for effective strategy and policy by government at all levels everywhere.
Rare Disease Day aims to raise awareness for people living with a rare disease and their families. In 2020, the message for this patient-led campaign is:
Rare is many. Rare is over 300 million people around the world.
Rare is strong. The rare disease community is connected across borders and diseases to raise awareness and advocate for equity.
Rare is proud. Show your support for the rare disease community with pride! The likely truth is that you know somebody affected by a rare disease.
Rare Disease Day is an opportunity to raise awareness of what rare really means:
- There are over 300 million people around the world are living with a rare disease, each supported by family, friends and a team of carers.
- There are over 6,000 identified rare diseases.
- Rare diseases currently affect 5% of the worldwide population.
- Each rare disease may only affect a handful of people, scattered around the world, but collectively the number of people living with a rare disease is equivalent to the population of the world’s third largest country.
- 72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes or are rare cancers.
- 70% of genetic rare diseases start in childhood.
- A disease is defined as rare when it affects fewer than 1 in 2,000 people.
Rare Disease Day in Australia
Australia first participated in Rare Disease Day in 2009 with many diverse events in multiple locations being held over the years to raise awareness of rare diseases among the general public. Check out the listing of events scheduled for this year.
The FDA on Rare Disease Day
The FDA in the USA, the most powerful regulatory agency for medicines in the world, says the following: We continue important work on treatments for rare diseases. As we commemorate Rare Disease Day, recognized worldwide at the end of February each year to raise awareness about rare diseases and their impact on the lives of patients and their families, the FDA has made progress in mitigating the toll of rare diseases. We are undertaking a number of efforts to advance the development of medical products to meet the needs of the rare disease population.