CON to Observe Rare Disease Day
The College of Nursing at the Medical University of South Carolina will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases.
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By raising your hand, you have just shown your support for the 30 million Americans who are affected by rare diseases. Thanks to you, Lundbeck has made a $1.00 donation to support rare disease research (up to a maximum donation of $10,000 for the campaign). The money raised will be contributed to a general research fund managed by the National Organization for Rare Disorders.
Last year's campaign provided a $10,000 donation that NORD awarded toward a research grant for Systemic Sclerosis, a rare disease that causes damage to the skin, but also involves the tissues beneath the blood vessels and major organs such as the intestines, lungs, heart, and kidneys. |
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Join NORD in Advocacy | Alone we are rare. Together we are strong.
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“This is a global observance,” said Peter L. Saltonstall, president and CEO of NORD. “Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives.” The challenges of living with a rare disease, he said,include: - Difficulty getting a timely, accurate diagnosis
- Too little research
- Too few treatments
- Reimbursement or other issues affecting access to treatments
- A sense of isolation
- Difficulty finding medical experts
In the U.S., any disease affecting fewer than 200,000 Americans is considered rare. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans. “Since many rare diseases are genetic, more than half of the people who have rare diseases are children” Saltonstall said. “The problems encountered by families are enormous. It’s important for these families to know they are not alone.” Studies have shown that it often takes five years or longer to get an accurate diagnosis of a rare disease. In addition, only about 200 of the diseases classified as rare have approved treatments. Rare Disease Day started in Europe in 2008. It was launched by EURORDIS (Rare DiseasesEurope). Last year, it was observed in more than 60 countries, with a national sponsor in each country. The National Organization for Rare Disease (NORD) is a major sponsor in the U.S. More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the national website hosted by NORD (http://rarediseaseday.us or http://www.rarediseaseday.org) . The MUSC College of Nursing is one of those partners. The College of Nursing will observe the day by wearing Jeans for Genes. Jeans are not usually part of approved dress for College of Nursing faculty and staff. On this one day of the year, permission is granted to spend the workday wearing jeans in order to express support for the millions of people across the world that must daily cope with their rare genes that cause disabling and serious illness. The MUSC College of Nursing will express solidarity with this international observance as it wears its jeans for genes and badges of support. It is estimated that 600 patient organizations, government agencies, clinical centers and private companies will observe Rare Disease Day this year in the US alone. For more information, contact Pam Williams at 843-792-9902. |
