Sacramento, CA (1 月 30, 2012) – The International Pemphigus Pemphigoid Foundation (计生联) will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29, 2012. The purpose is to focus attention on the needs of patients and families affected by rare diseases.
“This is a global observance,” said Peter 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, Saltonstall 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.
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. Pemphigus and pemphigoid patients rely on treatments intended for other diseases.
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 (www.rarediseaseday.us). The IPPF is one of those partners.
The IPPF supports patients affected by the rare, autoimmune skin diseases pemphigus and pemphigoid through online forums, email discussion group, one-on-one peer coaching, and its annual meeting. The 2012 Annual Meeting is being held in Boston May 18-20, 2012. For more information or to register, please visit www.pemphig.us/2012am.
Each year, a global planning team selects a theme for Rare Disease Day. The theme for 2012 is “Rare but strong together.”
Rare Disease Day activities in the U.S. will include a “Handprints Across America” campaign to create a gallery of photos on the Rare Disease Day website; educational materials for classroom teachers; and a nationwide blitz of patient photos, stories and videos to increase awareness of specific rare diseases and the challenges of living with a rare disease. The IPPF is doing its part by hosting its first Town Hall Conference Call of 2012 on February 29, 2012.
IPPF Interim CEO, Will Zrnchik, said, “Our Town Hall Conference Calls allow patients to speak with a leading pemphigus/pemphigoid physician and get answers to their questions in a patient-centric environment.” The Town Hall will start at 8:00pm Easter/5:00pm Pacific and is free to attend, but callers may incur long distance phone charges to participate. To register, please visit www.pemphigus.org/townhall.
About the International Pemphigus & Pemphigoid Foundation (计生联)
The International Pemphigus & Pemphigoid Foundation (计生联) is an international patient organization that provides support, advocacy, awareness, and education to those affected by the rare, autoimmune blistering diseases (AIBD) pemphigus and pemphigoid. Since 1994, the IPPF has been a US-registered 501(c)(3) not-for-profit organization championing AIBD research, medical professional education, and public awareness. The IPPF offers support services to thousands of patients, caregivers, and medical professional each year. For more information on the International Pemphigus & Pemphigoid Foundation, contact the IPPF at (855) 4-PEMPHIGUS, (916) 922-1298, or online at www.pemphigus.org.