Mesothelioma on International Rare Disease Day

• Lisa Hyde-Barrett
• Advocacy

Today is Rare Disease Day. This day is set aside as a worldwide event. The first international Rare Disease Day that included the United States was held in 2009. The theme this year is Patients and Researchers Partners for Life.

There are over 7,000 rare diseases recognized internationally, and approximately 90 percent still lack effective treatment. Eighty percent of them have identified genetic origins, and 75 percent of rare diseases affect children. Raising awareness that these conditions exist and that they affect people all over can shine a light on the need for further research.  

In 1983, when Congress passed the Orphan Drug Act of 1983, rare diseases were called orphan diseases because drug companies were not interested in developing treatments for them. This bill created financial incentives to encourage the development of treatment  and a definition of what a rare disease is. The definition of a rare disease in the United States is  a condition that affects fewer than 200,000 people. The definition is different in Europe where a rare disease is a disease that affects 1 in 2,000 people.

Malignant mesothelioma is a rare disease. A rare disease with an active community and supporters. The progress that has been made towards a cure for mesothelioma has been made by research. Research is slow and expensive.

The Mesothelioma Applied Research Foundation has raised millions for research towards a cure. In addition the Foundation supports patients and families throughout their journey with mesothelioma. Awareness and advocacy, continued over time, is important to bring attention to a rare disease like malignant mesothelioma. 

The overall goal of Rare Disease Day is to improve the knowledge of the general public on what is a rare disease. The National Organization of Rare Disease is raising awareness by encouraging people to light up buildings on February 28th. Their motto is “alone we are rare together we are strong.”

On Monday, February 28th, take a minute to learn about what challenges people with rare diseases face on a day to day basis. See the possibilities that a small community can accomplish when we all work together to a common goal.