International Pemphigus & Pemphigoid Foundation Receives Grant from Sy Syms Foundation to Reduce Diagnostic Delays of Rare Diseases
Continued funding to support dental education, outreach, and awareness of pemphigus and pemphigoid, two rare autoimmune diseases.
Since developing the Awareness Campaign in 2013, the IPPF has reached thousands of dental professionals and students. Due to its continued growth and impact, the Awareness Campaign transitioned into a permanent Awareness Program in 2017. A particularly successful aspect of the Awareness Program is the innovative Patient Educator Program, which sends pemphigus and pemphigoid (P/P) patients to dental schools across the US to share their stories of delayed diagnosis. These emotional stories compliment traditional lectures, encouraging students to remember P/P should they encounter symptoms in future practice. Since March 2014, IPPF Patient Educators have provided over 60 presentations at 20 different dental schools, reaching more than 6,500 students and faculty.
"The Sy Syms Foundation's continued support makes our Awareness Program possible," said Kate Frantz, IPPF Awareness Program Director. "Because of their generous funding, we have been able to increase our Program's impact, reaching thousands of dentists, dental hygienists, faculty, and students who now have pemphigus and pemphigoid on their radar! We are hopeful that patients will be diagnosed sooner and we have the Sy Syms Foundation to thank for this."
Pemphigus and pemphigoid are rare, autoimmune blistering diseases that affect a very small percentage of the population. The average patient with P/P sees five doctors over ten months in search of a correct diagnosis for their condition. Delays in diagnosis and appropriate treatment can lead to a number of complications, including significant functional impairment, resistance to treatment, psychological stress, and a lower likelihood of achieving remission. The majority of P/P patients present with oral symptoms before the onset of skin lesions. Because of this, dentists have a unique opportunity to help shorten diagnosis times by identifying signs and symptoms when they are first encountered.
About the Sy Syms Foundation
The Sy Syms Foundation was established in 1985 by retail entrepreneur and humanitarian, Sy Syms. His mission was to support education, and through his generosity the non-profit Foundation has affected the continued growth of many institutions of higher learning, medical research, and civic and cultural bodies. For more information on the Sy Syms Foundation, visit sysymsfoundation.org or call (201) 849-4417.
About the International Pemphigus & Pemphigoid Foundation
Since 1994, the IPPF has been the pre-eminent global organization dedicated to improving the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support. For more information on the IPPF Awareness Program, visit PutItOnYourRadar.org or call (855) 4PEMPHIGUS.
Patrick Dunn (Communications Manager)
International Pemphigus & Pemphigoid Foundation