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International Pemphigus Pemphigoid Foundation to Join NORD in Observing Rare Disease Day
By: National Organization for Rare Disorders
“Everyone knows someone with a rare disease,” said Peter L. Saltonstall, president and CEO of NORD. “Rare Disease Day is a time to show support for the 30 million Americans – and millions more around the world – living with rare diseases.”
A rare disease is one that affects fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans, according to the National Institutes of Health (NIH).
Two-thirds of those affected by rare diseases are children, and the diseases tend to be serious and lifelong. Even so, most rare diseases have no approved treatment, and many are not even being studied by medical researchers. Often, research on rare diseases is funded by the families and friends of patients or by patient organizations.
On Rare Disease Day, patient organizations around the world unite to promote awareness of the challenges, hopes and needs of those living with rare diseases. For 2014, the focus is on caregiving, and the global theme is “Join Together for Better Care.”
"Events like this allow patients and caregivers to create awareness at a grass-roots level," said Will Zrnchik, IPPF CEO. "After all, no disease should be considered too rare for affordable treatment and direct support."
In the U.S., the coalition supporting Rare Disease Day includes patient organizations, NIH and other government entities, medical researchers, hospitals and academic institutions, and pharmaceutical companies developing treatments for rare diseases.
Rare Disease Day 2014 activities in the U.S. will include State Legislature awareness events, a Tribute to Caregivers and Handprints Across America photo gallery on the national website, and events in communities across the U.S.
Rare Disease Day was launched in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. It is now observed in more than 65 nations, and is sponsored in the U.S. by NORD.
For more information about Rare Disease Day activities in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org. For information on pemphigus or pemphigoid, go to www.pemphigus.org.
International Pemphigus Pemphigoid Foundation