This year we are celebrating Rare Disease Day by honoring Bailey Regalado. Bailey is 12 years old and has type 3 Gaucher disease. She was diagnosed when she was nine months old and despite the hardship Gaucher has had on her and her family’s lives, she is always smiling. And what a beautiful smile she has!
Please watch Bailey’s video below, read the articles, and share them with everyone you know. For Rare Disease Day 2021, help raise awareness about Gaucher and other rare diseases so that we can inform decision makers and the general public of the impact rare diseases have on our lives.
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. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. 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.
A few facts about rare diseases
There are over 7,000 rare diseases.
300,000,000 people worldwide are living with a rare disease.
One in 20 people will live with a rare disease at some point in their life.
There is no cure for the majority of rare diseases, many don’t even have treatments, and many go undiagnosed.
We are all unique. No two people with a rare disease are alike.
We are many, and the more we stand up together and have a voice, the better we will be heard and encourage more possibilities for those of us with a rare disease.