Rare Disease Day 2024: Learn about its Importance, FAQs and Unknown Facts

Rare Disease Day 2024: Rare Disease Day is observed annually on the last day of February throughout the globe. The primary objectives of Rare Disease Awareness Day are to enhance medical representation and treatment accessibility for individuals afflicted with rare diseases, as well as their families. Briefly, Uncommon Disease Day is a coordinated effort to promote diagnostic and therapeutic access, healthcare equity, and diagnostic and therapeutic parity for individuals afflicted with uncommon diseases.

Rare Disease Day has been instrumental in fostering a global, diverse, and multi-disease international rare disease community since its inception in 2008. February 29, 2024, will mark the observance of Rare Disease Day.

Rare Disease Day: History

The European Organization for Rare Diseases established the inaugural Rare Disease Day on February 29, 2008. A date is rare if it happens only once every four years. People observe Rare Disease Day every year on the last day of February, a month known for its unusual number of days. In addition to increasing access to treatment and medical representation for individuals with rare diseases and their families, the purpose of this day is to bring attention to these conditions. As inadequate as the social networks that support individuals with rare diseases and their families are the treatments for many of these conditions.

On Rare Disease Day, participants organize fundraisers, press conferences, and treks, compose letters en masse to government representatives, and host gatherings, campaigns, and events. The European Parliament has scheduled an open session dedicated to discussing policy matters concerning uncommon diseases.

Other policy-related events take place in various locations in the days preceding Rare Disease Day. For instance, policymakers convene at a reception held in the British Parliament with individuals afflicted with rare diseases. The purpose of these gatherings is to deliberate on matters including equitable access and availability of prevention, diagnosis, treatment, and rehabilitation.

Every year since its inception, thousands of events have taken place, including seminars, art exhibits, races, and walks. The purpose of these gatherings is to provoke policymakers’ interest and motivate community transformation. On this day, historical structures such as the Colosseum and the Empire State Building illuminate in the emblematic colors pink, blue, and green to inspire millions of people around the globe and convey messages of solidarity.

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Rare Disease Day 2024: FAQs

What is a rare disease?

More than 6,000 uncommon diseases have been identified, and they affect more than 300 million individuals worldwide.

Which colour represents Rare Disease Day?

While pink, blue, and green represent the main colors for Rare Disease Day, local symbols may vary.

Rare Disease Day 2024: Importance

Rare Disease Day allows for informing the global public about the efforts being made on a local, national, and international scale to combat rare diseases. It is annually observed on February 28 (or February 29 during leap years). With the assistance of over 65 national alliance patient organization partners, EURORDIS organizes Rare Disease Day.

The day emphasizes the importance of educating the public, policymakers, researchers, healthcare professionals, and industry leaders regarding the impact of uncommon diseases on the lives of patients. Additionally, it fosters the development of support networks and solidarity among families and individuals impacted by rare diseases.

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Rare Disease Day: Facts

In the U.S., rare diseases affect one in every ten individuals.
50% of rare disease patients are children.
Globally, rare diseases impact more than 300 million individuals.
50% of rare diseases that impact the human population lack a research support group or foundation.
A treatment licensed by the FDA is absent for 95% of rare diseases.