Rare Disease Day

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Today is Rare Disease Day!

NORD is the official US sponsor of Rare Disease Day®, which occurs on the last day of February each year. On Rare Disease Day, millions of patients and their families around the world share their stories. These stories serve to promote awareness of the challenges, hopes and needs of those living with rare diseases.

What is a Rare Disorder?

A rare disease or disorder is defined in the USA when it affects fewer than 200,000 Americans at any given time. 80% of rare diseases have identified genetic origins while others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases affect children.

Over 6000 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.

The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families. Doctors are taught, “when you hear hoof beats, think horses not zebras.” This is why those with rare diseases often refer to themselves as zebras and wear zebra print awareness pins.

Personalized Cause offers two types of zebra awareness ribbon pins. These include a personalized version, that can be inscribed with a name, date or message. This type of pin offers tremendous support for someone struggling with a rare disease. A second ribbon, the traditional enamel awareness ribbon loop, supports the cause in general. Both can be used for fundraising and calling awareness to your loved one’s specific rare disease on Rare Day..

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