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 to promote awareness of the challenges, hopes and needs of those living with rare diseases.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. 80% of rare diseases have identified genetic origins whilst 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 characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients 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.
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