Rare diseases, also known as orphan diseases, affect a small percentage of the population. In the US, diseases that affect fewer than 200,000 people per year are considered rare. While each rare disease only affects a small percentage of the population, collectively, “rare” is not rare. With over 7,000 rare diseases, nearly 1 in 10 Americans are currently living with a rare disease. 

Rare Disease Day takes place on the last day of February each year. Rare Disease Day is a global initiative to raise awareness about the impact of rare diseases on patients’ lives and to emphasize the need for research. Since its establishment in 2008 by EURORDIS (Rare Diseases Europe), the annual event highlights rare disease advocacy work on the local, national and international levels. The National Organization for Rare Disorders (NORD) is the official US sponsor of Rare Disease Day.

Raising awareness about rare diseases can help the cause by:

• Driving improvements in disease diagnosis:  Raising awareness can help improve doctors’ recognition of rare diseases and avoid unnecessary delays in patients’ diagnosis and treatment.
• Promoting critical research efforts: Most rare diseases, including fibrolamellar, do not have FDA-approved treatments. Increased awareness and visibility of these urgent needs can help drive increased research funding and new drug development efforts. 
• Fostering better patient support:  Increased awareness focuses attention on the needs of those affected by these diseases, and can help build supportive communities.

We are all touched by rare diseases in many different ways. On this Rare Disease Day, we encourage everyone to think about how they can support the effort. The options are many – donating to organizations that are focused on making research breakthroughs, learning about rare diseases and how they affect those living with them, offering hope to patients, volunteering, and more. Your participation can make a difference!

For information about what’s happening on Rare Disease Day around the world, please visit rarediseaseday.org. Below also is the official 2024 Rare Disease Day video.