California's Rare Disease Day resolution, CA AR-32, was authored by State Assemblymember Kevin Mullin (D-22nd). The day will be to learn more about rare diseases, meet representatives from involved organizations, speak with politicians and industry leaders and hear from those living with rare diseases. Please RSVP to attend this free event by calling the IPPF at (916) 922-1298 x 125.
The International Pemphigus & Pemphigoid Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day. "Today is not just about the patients diagnosed with a rare disease," said William J. Zrnchik, IPPF CEO. "It is about their families, friends, and everyone affected by rare diseses coming together for better care, to share their stories, and put the spotlight on the entire rare disease community."
“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.”
In America, a rare disease is one that affects fewer than 200,000 individuals. 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.”
The IPPF is the pre-eminent global organization dedicated to improving the quality of life of all people diagnosed with, or affected by, pemphigus or pemphigoid (P/P). P/P are rare autoimmune blistering diseases which affect the skin and/or mucous membranes. The IPPF provides patients and doctors worldwide with information on P/P and provides patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. The average P/P patient will see five or more doctors over a span of 10 months before they receive a correct diagnosis. The IPPF seeks to shorten this diagnosis time through a national awareness campaign, which educates patients and dental providers on symptom recognition.
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).