Rare Disease Day® and Myasthenia Gravis

The last day of February is Rare Disease Day® all around the world. It is a day to recognize and raise awareness about rare diseases and how they impact patients and families. The goal is to inform policymakers, public authorities, industry representatives, researchers, and health professionals about more than 7,000 rare diseases.¹

There are over 300 million people living with a rare disease around the world, including 25 to 30 million in the United States. This means that 1 out of every 20 people will at some point live with a rare disease. Myasthenia gravis (MG) is a rare disease that affects between 36,000 and 60,000 people the US.^1-3

What is the origin?

Rare Disease Day began in Europe in 2008. It was launched by EURORDIS, the European Organization for Rare Disorders, and its Council of National Alliances. The National Organization for Rare Disorders (NORD) is the official sponsor of Rare Disease Day in the United States. NORD has a rare disease database that catalogs information on rare diseases.^1,2

By definition, any disease that affects fewer than 200,000 people is considered rare, at least in the US. This classification comes from the Orphan Drug Act of 1983.²

Many rare diseases go undiagnosed because doctors sometimes lack knowledge and information about the broad array of rare conditions. Most rare diseases have no cure, and getting treatment can be hard. There is limited medical research on rare diseases because of the small numbers of people that are affected by each condition.^1,2

The objective of Rare Disease Day

Rare Disease Day is designed to raise the profile of and share information about rare diseases. Awareness is needed not only among the general public, but also among scientific, medical, and governmental decision-makers. Awareness among decision-makers can lead to them supporting initiatives that meet the needs of people with rare diseases.^1,2

Rare Disease Day is a media campaign with events scheduled around the world. On this day, rare disease societies or umbrella organizations that cover 1 or more conditions work together to promote disease awareness. Organizations on a local and national level plan events in communities and countries globally. The events focus on specific diseases as well as on the broader concept of what a rare disease is.¹

The symbol

The zebra is the official symbol of rare diseases in the United States. The black and white stripes of a zebra are unique, which represents the uniqueness of people with rare diseases.²

The day

The first Rare Disease Day in the US took place on February 29, 2009. Rare Disease Day is always the last day of February. This year, it will be on February 28.

What is myasthenia gravis?

Myasthenia gravis is a chronic autoimmune disease. Autoimmune means that the body’s immune system cannot tell the difference between healthy cells and invaders like viruses, fungi, or bacteria. Because it cannot tell the difference, the body begins to attack and damage healthy cells. Chronic means that it lasts for a long time or never goes away completely.

With MG, the body attacks areas where nerves communicate with muscles. This communication is what makes muscles work. Without the ability to communicate properly, the muscles become weak and tire easily.⁴

Getting involved

Programming and fundraising that brings awareness to rare diseases can help people with myasthenia gravis. Increased funding for research can lead to more effective treatments and, possibly, a cure.

Specific information on Rare Disease Day events in your area can be found at rarediseaseday.org. People with MG and their families may contact their local MG chapter to find out if there are any events in their area. In addition, literature, media, and marketing materials are available on the website for those interested in hosting their own event.