This February 28 is Rare Disease Day. With so many things going on in the world around us, it’s very easy to put off important things like health. That’s why the last day of February each year we mark our calendars to bring awareness to rare diseases. An average of 1 in 20 people live with a rare disease at least once in their lifetime, few of which see any sign of a cure. The goal of Rare Disease Day is to improve knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Rare Disease Day is an observance held on the last day of February to raise awareness about diseases that most people will not know of, as well as to improve access to treatment.
EURORDIS (The European Organization for Rare Diseases) says that treatment for many rare diseases is insufficient, and some people’s quality of life is greatly hindered by inequality, simply because people have never heard of their disease, or do not understand the disease and the patient’s needs.
Since 2008, EURORDIS has been putting in place social networks to help support individuals with rare diseases and their families, as well as Co-Ordinating events for Rare Disease Day at an international level.
2010 featured balloon releases, marathons, auctions and tree planting events to raise awareness, and each year people affected by rare diseases are encouraged to share pictures and their stories with the world.
History of Rare Disease Day
Founded by the European Organization for Rare Diseases, the first Rare Disease Day was celebrated in 2008 on February 29 . A “rare” date that happens only once every four years. Since then, Rare Disease Day has taken place on the last day of February, a month known for having a rare number of days. The day is held to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families.
Individuals observing Rare Disease Day take part in walks and press conferences, organize fundraisers, write en masse to government representatives, along with holding events, gatherings, and campaigns. The day also includes an open session of the European Parliament specifically dedicated to discussing policy issues relating to rare diseases. The days leading up to Rare Disease Day include other policy-related events in numerous locations, such as a reception in the British Parliament where policy makers meet with individuals with rare diseases to discuss issues such as equal access and availability of prevention, diagnosis, treatment and rehabilitation.
Each year since its beginning there have been thousands of events stemming from races and walks to art exhibits and workshops. These events are held to bring attention to policy makers and inspire change in the community. Historical monuments such as the Colosseum and the Empire State building have taken steps in sending messages of solidarity on this day by lighting up with the iconic pink, blue, and green colors, providing hope for millions world-wide.
Rare Disease Day timeline
The U.S. Food and Drug Administration (FDA) approved Truvada for PrEP use to prevent the spread of HIV.
The First Rare Disease Day
Taking place on the 25th anniversary of the passing of the Orphan Drug Act, the very first Rare Disease Day is observed in numerous European and Canadian nations.
The Orphan Drug Act
The Orphan Drug Act was passed to facilitate development of drugs for rare diseases.
The First Rabies Vaccine
Nine-year-old Joseph Meister, who had been mauled by a rabid dog, was the first human to receive this vaccine.
The First Vaccine
Edward Jenner, a country doctor living in England, performed the world's first vaccination saving potentially millions of people from smallpox.
Rare Disease Day FAQs
What is a rare disease?
A disease defined as rare is when it affects fewer than 1 in 2,000 people. However, there are over 300 million people living with one or more of over 6,000 identified rare diseases around the world.
What color is rare disease day?
While the colors most used for Rare Disease Day are pink, blue, and green, locally worn symbols may vary.
What is a disease?
A disease is disorder of structure or function in a human, animal, or plant that is not a direct result of physical injury.
5 FACTS ABOUT RARE DISEASES
1 in 10
1 in 10 people suffer from rare diseases in the U.S.
It largely effects children
50% of those affected by rare diseases are children
Rare diseases affect over 300 million people worldwide
Half of rare diseases affecting people don’t have a foundation or research support group
The big number
95% of rare diseases lack an FDA approved treatment.
Rare Disease Day Activities
Spread the word
Share posts about Rare Disease Day on social media and inspire friends to raise awareness for rare diseases.
Every year, thousands of events are organised around the world during the month of February to mark the occasion of Rare Disease Day. Patient organizations, healthcare professionals, researchers, policymakers and other members of the rare disease community organize Rare Disease Day events. Find events near you, or go to the website and start your own!
Tell Your Story
Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial to rarediseaseday.org
Why We Love Rare Disease Day
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.
The majority of rare diseases have no found cure and many go undiagnosed, by bringing awareness we open up hearts and minds to the possibility of finding a cure.
Significant advances in rare disease policy can be seen on a global scale throughout the years and has helped improve the quality of life for many around the world.