Rare Disease Day
(Photo Credit: Rare Disease Day)
So here is an interesting Awareness Day. I didn’t know there was one for rare diseases. The date for it varies depending on if it is a leap year. This year’s Rare Disease Day will be on February 28, 2022.
(Photo Credit: "Panelists at Rare Disease Day at NIH" by NIH-NCATS)
What is Rare Disease Day? “Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease” (Rare Disease Day). The Awareness Day was created in 2008 to advocate for those in the international rare disease community. Each year it is remembered on February 28, or on February 29 in a leap year (a rare day).
Over 300 million people have a rare disease. One that many will share their stories how their lives have been affected by it. Some of these stories are haunting as they tell of people struggling with rare diseases. A majority were not even aware such a disease existed until years later. Thus, it is the patients’ hope to create awareness of these diseases to share their stories so that others can find comfort and knowledge.
(Photo Credit: "Rare Disease Portrait Unveiling" by NIH-NCATS)
Rare Disease Day is patient-led to raise awareness and help others who suffer similar symptoms but may not be aware of the disease. “Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention” (Rare Disease Day). This day is organized by EURORDUS and about 65 National alliances of patient organizations. The theme is “Share Your Colours.”
(Photo Credit: "Horizon students 'Joining Hands for Rare Diseases'" by rarediseaseday)
How can you get involved? The Rare Disease Day website is a fantastic website for those who wish to get involved. They have a list of events from all over the world that recognize the Awareness event. Please check it out and find out how you can support those who struggle with a rare disease.
They even created an official Rare Disease Day YouTube Video you can watch below.