Rare Disease Day takes place on the last day of February each year. This event started in 2008 on the 29th of February, a date that is considered “rare” in that it only happens once every four years. This awareness day started in Europe and has quickly spread across the world, now including over 100 countries. Let’s continue to increase awareness and join in on spreading the news!
In the United States alone there are 25-30 million Americans who are impacted by rare diseases. Some people are born with rare diseases and live with them throughout their lives, while others develop a rare disease in childhood or adulthood. Approximately 1 in 20 people throughout the world will live with a rare disease during their lifetime. While there is always ongoing research and hope for cures for many rare diseases, more often than not there are no cures. As we raise more awareness, the general public can not only contribute to spreading the knowledge of rare diseases but encourage those in power to make changes and move forward with research and treatment options for many diseases and conditions that remain uncured.
Genetic Counselors often meet with patients who are living with rare conditions, or who have the chance to pass on these conditions to their children. There are many genetic tests for hundreds of rare diseases and conditions, but a lot remains unknown. As we learn more about many rare diseases, we can learn about the genetics. In doing so, genetic counselors help individuals understand how rare diseases are passed on. This helps inform families of the risks they carry.
Rare Disease Day Events
There are so many events across the world to participate in on this important day! In the United States, Canada, and the United Kingdom there is a Rare Disease Day Virtual Race. Anyone can register for the event and choose how far they want to walk or run to complete the event. Participants receive a medal of a zebra encircled by the Rare Disease Day overlapping hands. In medicine, the term “zebra” is used to reference a rare disease or condition.
In Cambridge, Massachusetts the Broad Institute will be hosting the “Beyond the Diagnosis” art exhibit for the 5th consecutive year. This art exhibit features portraits of patients suffering from a rare disease, painted and donated by accomplished artists. In Paris, France the Genodermatoses & Rare Skin Disorders Network is hosting a drawing competition, aimed at raising awareness about rare skin diseases and allowing people to express their feelings about these diseases and issues. Anyone can enter a drawing of any nationality or experience.
With hundreds of organizations supporting awareness for rare conditions, this is an opportunity to not only help others but help anyone in your family who lives with a rare disease. Wear your Rare Disease Day shirt proudly, and consider taking part in a program that speaks to you. Learn more about what the NIH has to tell us about Rare Diseases from the Genetic and Rare Diseases Information Center (GARD). For more information about this year’s events, visit rarediseaseday.org to learn more about events in your area or how you can participate!
If you’d like to learn more about your personal and family history of rare conditions or other hereditary matters, contact us or schedule and appointment with Advanced Tele-Genetic Counseling‘s certified genetic counselors for a same-week telehealth appointment, or learn more.