133 - What is Rare Disease Day & why is it the last day in February?

Rare Disease Day is an international observance held on the last day of February every year. The purpose of this day is to raise awareness about the thousands of rare diseases that affect millions of people worldwide.

A rare disease is defined as a condition that affects fewer than 200,000 people globally. There are over 7,000 known rare diseases, and the majority of these have no cure or effective treatment.  Recent publications suggest over 300 million people are affected by rare diseases globally.

Despite the large number of people affected by rare diseases, many of these conditions are still not well understood or recognized by the general public. This is why Rare Disease Day is so important - it provides an opportunity for people living with rare diseases, their families, and advocates to come together and raise their voices in support of better care, treatments, and ultimately a cure.  That is exactly what we do at the Syngap Research Fund, 501c3.

Rare Disease Day is held on the last day of February because it is the rarest day of the year, symbolizing the rarity of the diseases that it is designed to raise awareness about. The last day of February also holds significance as the day when the European Organisation for Rare Diseases (EURORDIS) was founded, making it a fitting date to commemorate the needs and challenges faced by the millions of people affected by rare diseases.

By holding Rare Disease Day on the last day of February, we draw attention to the lack of understanding, recognition, and resources that people living with rare diseases often face. The event serves as a rallying point for patients, families, and advocates to come together and raise their voices in support of better care, treatments, and ultimately a cure for these conditions.

In this way, Rare Disease Day is not only about raising awareness, but also about empowering individuals and communities affected by rare diseases to advocate for change and to work towards a brighter future.

Join SRF in celebrating Rare Disease Day by supporting our fundraiser which has a matching fund of $20,000. Help us invest in SYNGAP1 research. Remember 100% of donations to SRF go to science since our founders cover all overhead/operating expenses.