Rare Disease Day takes place on the last day of February each year. 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.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
For those of us that care for individuals and their families living PID, we are very aware that many of these maybe classified a a rare disease.
for further information on rare disease day please follow the link:
https://www.rarediseaseday.org/
In Australia, the IDFA have released a story book to promote the fact that many Immunodeficincies are rare diseases. Follow the link to read it:
http://www.idfa.org.au/wp-content/uploads/2019/02/Rare-Disease-Day-1-1.pdf
