On February 28, 2021, countries around the world will celebrate Rare Disease Day. What is it and why is it important? This article sheds some light on this special day and how it helps patients and loved ones affected by rare diseases.
What Is Rare Disease Day?
Rare Disease Day or Rare Disease Awareness Day is observed annually on the last day of February to raise awareness and consequently, improve access to the treatment and overall medical representation for rare disease patients and their families.
Over 300 million people around the world are affected by rare diseases. In the U.S., rare diseases are defined as conditions that affect less than 200,000 Americans.
When Was Rare Disease Day Established?
The European Organisation for Rare Diseases or EURORDIS established Rare Disease Day in 2008. Several European nations and Canada observed the first Rare Disease Day on February 29 of that year. They chose February 29 because it is a rare date that happens once in every four years, and it coincided with the 25th anniversary of the Orphan Drug Act in the U.S.
The U.S. first celebrated Rare Disease Day in 2009. The National Organization for Rare Disorders (NORD) collaborated with the Discovery Channel and 180 other partners to plan events around the country.
Over the years, more and more countries joined in. According to the Rare Disease Day website, in 2020, over 1,000 events took place in over 100 countries. The newest countries to participate included Gabon, Iraq, Rwanda, and Kosovo.
How Is Rare Disease Day Observed?
People and organizations who participate in Rare Disease Day take part in walks, gatherings, campaigns, and press conferences to raise awareness of rare diseases among the public. Fundraisers and discourses with government representatives are also common ways of observing this day.
Colors are also used to show support. Over the years, several landmarks around the world including the Empire State Building in New York City, the Colosseum and the Leaning Tower of Pisa in Italy, the Burj Khalifa in the United Arab Emirates, and many others have been illuminated with pink (PMS 225c), green (PMS 360c), blue (PMS 306c), and purple (PMS 259c) lights in observance of the day.
Many other symbols are also used for the observance including zebra stripes and blue denim colored ribbons.
How Can People Participate?
People can sign up and participate in the events in their local area. They can wear colors or symbols to show support. Those inclined can also find ways to raise awareness by sharing information and personal experiences.
All year-round, individuals who have rare diseases or their families can participate in studies. There are several study volunteer opportunities that not only help develop the science but can also be profitable for participants. Patients and loved ones who partake in these studies can also meet people with similar diseases and share common experiences.
Join Rare Disease Day with Rare Patient Voice
Whether you are a rare disease patient, a loved one, or an organization, you can help spread the word about rare diseases by working with us. We will be virtually participating in the Rare Disease Day event sponsored by the National Institutes of Health. We also welcome partnerships with patient advocacy organizations.
Send us an email at ContactUs@RarePatientVoice.com for more details.
