Updated: Feb 28
They say we birdies have a rare disease, but how does a disease qualify as rare? And how does that affect our chances for treating our disease and finding a cure?
In the U.S. the prevalence of a disease must be less than 1 in 1,500 persons in order to qualify as a rare disease. Each country sets its own qualifications.
Rare diseases are sometimes referred to as orphan diseases. Due to the small number of patients, these diseases have not always garnered much attention from researchers and pharmaceutical companies, but the situation has begun to improve. Among other factors, communities of patient advocates are being formed easily through social media, and genetics and other researchers are broadening their scope. Our own BUSNA was formed just last year with the goals of supporting patients, increasing awareness, and raising funds for Birdshot research. According to most estimates there are more than 6000 rare diseases, yet only 400 are said to have successful therapies.
How rare is Birdshot Uveitis? Uveitis itself is classified as a rare disease, and Birdshot accounts for around 6-8% of uveitis cases, so yes, "we" qualify as rare! The Rare Genomics Institute states the prevalence of Birdshot in the United States is about 1 in 200,000 people, and this is in line with most other estimates. Older women (50-70) of northern European descent are more likely than others to be diagnosed with Birdshot.
In 2008, the rarest day of the shortest month was designated as Rare Disease Day. Of course February 29th only occurs once every four years, so the day is usually marked as either February 28th (USA) or March 1st (UK) . It’s a special day for raising awareness of the many rare diseases that affect between 3.5 and 5.9% of the population.
Rare Disease Day is a patient-led movement that highlights rare diseases in many countries around the world. This year there’s a special video that highlights six people with six different rare diseases.
Events marking Rare Disease Day are happening all around the world. Landmark buildings such as The Empire State Building in NYC and CN Tower in Toronto will be lit up in the colors of the day – blue, green, pink and purple. Some events are fundraisers but most aim to simply raise awareness. Raise a Toastie is being held in Ireland, where people are encouraged to create a tasty toasted sandwich and get together – either as a small group or on Zoom - with friends or family!
What can you do on Rare Disease Day? Stripes are associated with this day and you could wear stripes or change your profile picture on social media to raise awareness. You could even share your story on the Rare Disease Day 2021 blog. There are so many stories to read, so many stories to tell.
However you to mark the day, the fact that more and more patients, physicians and researchers are making valiant efforts on behalf of Birdshot Uveitis patients should bring you some degree of comfort and hope. Every day we’re getting closer to a cure! Join BUSNA in our mission as we aim for clearer vision.
Birdshot Uveitis Society of North America (BUSNA) is a volunteer organization comprised of persons diagnosed with Birdshot Uveitis. It provides information and support for North American patients and it raises funds for Birdshot Uveitis research. For more information, please visit our website.
Birdies, friends, family and medical professionals
are invited to join our BUSNA community at