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Rare Disease Day
Today is Rare Disease Day!
NORD is the official U.S. sponsor of Rare Disease Day. It occurs on the last day of February each year. On this important day, millions of patients and their families around the world share their stories. These stories, in addition to raising awareness, serve to promote education about living with a rare disease or disorder. This includes challenges, hopes, and the specific needs of those living with rare diseases and disorders.
What is a rare disease or disorder? Rare Disease Day!
A disease or disorder is considered rare in the United States when it affects fewer than 200,000 Americans at any given time. 80% of rare diseases have identified genetic origins. They are often the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. In addition, 50% of rare diseases affect children.
Over 7,000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from person to person. These people are suffering from the same disease, yet with different symptoms.
Common Symptoms Can Lead to Misdiagnosis
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the person’s quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
Further, there are often no existing effective cures. This adds to the high level of pain and suffering endured by patients and their families. Doctors are taught, “When your hear hoof beats, think horses not zebras.” This is why those with rare diseases often have to wait longer to receive a correct diagnosis. Many refer to themselves as zebras and wear zebra print awareness pins to call attention to rare diseases.
Know Your Family History
Knowing your family’s health history can help your care team find out if a disease runs in your family. This enables them to watch for signs or test you or your family members before a disease or disorder becomes a problem, and also start treatment earlier.
Since family history is such an important topic for everyone to understand, particularly communities of color, we raise awareness of this during Rare Disease Week. We hope to increase your knowledge and understanding of family history and genetic testing, help you get to a diagnosis quicker, and get better care.
Personalized Cause® and Rare Disease Day
Personalized Cause® offers two types of zebra awareness ribbon pins. These include a personalized version, that can be engraved with a name, date or message. This type of pin offers tremendous support for someone struggling with a rare disorder. A second ribbon, the traditional enamel awareness ribbon pin, supports the cause in general. Both can be used for fundraising. In addition, calling awareness to your loved one’s specific rare disease on Rare Disease Day shows love and support.
Look at the pins, below, to determine which is right for you. The zebra pin represents rare diseases, the blue jeans pin represents genetic diseases, and the zebra, pink and blue pin represents undiagnosed diseases.
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