Rare Disease Day®
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 25-30 million Americans. This means that 1 out of every 20 people will at some point live with a rare disease. Cystic fibrosis (CF) is a rare disease that affects more than 30,000 people in the US.1,2
The origin of Rare Disease Day
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 specific rare diseases.1,2
In the United States, any disease that affects fewer than 200,000 people is considered rare. This classification comes from the Orphan Drug Act of 1983.2
Many rare diseases go undiagnosed because providers sometimes lack knowledge and information about the broad array of rare conditions. Most rare diseases have no cure, and getting treatment can be difficult. 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 one 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 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 first Rare Disease Day in the US was February 29, 2009. Rare Disease Day is always the last day of February. This year, it will be on February 28.
Cystic fibrosis is a rare disease
Cystic fibrosis is a genetic disease that causes lung infections, in addition to other symptoms, and limits a person’s breathing ability over time. It is caused by genetic mutations (changes) in a specific gene called the cystic fibrosis transmembrane conductor regulator (CFTR). When the CFTR proteins do not form correctly, they can cause an imbalance in the salt and fluid levels inside and outside of cells. The results of these genetic errors cause the symptoms associated with cystic fibrosis.3
Get involved with Rare Disease Day
Programming and fundraising that brings awareness to rare diseases can benefit people with cystic fibrosis. 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 CF and their families can contact their local CF chapter to find out if there is event programming in their area. Additionally, literature, media, and marketing materials are also available on the website for those interested in hosting their own event.
PARENTS: Do you have a hard time finding snacks that your little CFer will eat?
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