Awareness is a big part of what the IPPF does. The more people know about our diseases, the more people can do about it. On February 28, 2013, the IPPF led a group of six rare disease organizations in our first-ever Rare Disease Day awareness session at the California State Capitol. More than 40 people were on hand to hear talks from rare disease patients and caregivers, including Rare Disease Day Resolution author Assemblymember, Marc Levine (D-CA 10th District), and IPPF Founder, Janet Segall. That evening, another successful international Town Hall took place, with Dr. Takashi Hashimoto from Japan as he battled technology and a 17-hour time difference to answer questions from more than 20 attendees. And this month, March, is Autoimmune Disease Awareness Month.
Still not enough awareness for you? The IPPF is making progress on its Awareness Campaign that targets dentists in training and in practice. This campaign will provide a consensus-based outcome paper on diagnosis and treatment and fund a two-year fellowship program. Patients seeing five physicians over 10 months before being diagnosed is a problem! Because the majority of pemphigus patients have some oral involvement, we see this as part of the solution.
The annual Patient Conference is coming up and San Francisco is THE place to be! Join us April 26-28, 2013 at the Hilton SFO Bayfront (register online at www.pemphigus.org/2013sf or use the form on page 15).
I want to thank Marc Yale for his work in making Rare Disease Day a success. Marc coordinated RDD events 500 miles away and a Town Hall with a guest speaker 5,000 miles away. He also joined me on a 2,700-mile, in-person trip to Miami to meet with our Medical Advisory Board and the Coalition of Skin Diseases. Marc is a man of many talents and the IPPF is better because of him. Thank you, Marc!
Inside you will find some great patient stories. Look for Toby Speed’s article on her 2012 Patient Conference experience and why she is coming back this year. Dr. Terry McDonald talks about pacing yourself in Psychologically Speaking.
IPPF BOD President Dr. Badri Rengarajan interviewed U.S. Food and Drug Administration (FDA) officers. Internationally, Italian Pemphigus & Pemphigoid Association Board member Filippo Lattuca has good news for pemphigus patients in Italy; Dr. John Dart is holding a meeting for pemphigoid patients in London; UK patient Sue Bishop tells her story about PHC Sharon Hickey traveling from the U.S. to the U.K. to visit; and Canada’s Dan Goodwill is Still Going Strong.
I hope you enjoy this issue — our community helped write it!