Nestled in the pristine Swiss Alps, the Hotel Allegro in the city of Berne, Switzerland was the location for an international meeting discussing all aspects of pemphigus. The meeting consisted of 3 days of intense scientific discussions. The meeting was co-sponsored by the IPPF and many members of the IPPF Medical Advisory Board were present. Included were Dr. Jean-Claude Bystryn, NYU Dermatology; Dr. Sergei Grando, UC Irvine; Drs. John Stanley and Victoria Werth, UPenn; Prof. Michael Hertl, Phillips Univ., Germany; Prof. Marcel Jonkman, Univ. of Groningen, Netherlands; Prof. Pascal Joly, Rouen Univ., France; Dr. Masa Amagai, Keio Univ., Japan; and Dr. Grant Anhalt, Johns Hopkins University. Ms. Janet Segall was there representing the patient’s perspective and the IPPF.
Professor Eliane Muller, President of the meeting’s Organizing Committee, and a member of Molecular Dermatology, Institute Animal Pathology, Vetsuisse Faculty, University of Berne, Switzerland, welcomed the speakers and participants. Janet spoke
to the group about the importance of the IPPF and patient groups in general, highlighting that with a rare disease, it is often difficult for patients to find cohesive care and Foundations can be the glue for many.
Janet thanked all of the doctors for being there and for all the care they give to patients, to Janet herself, and to the IPPF.
With the meeting officially open, the presentations got down to the intricacies of cell development, cell adhesion, and cell signaling. At the end of the day, the groups broke up into workshops with more technical discussions or workshops about treatments. Although all current treatments were discussed, the main topic of discussion was centered around the use of rituximab. Many of the participants felt that rituximab may be the most effective drug so far for treating pemphigus, and at some point in the future, could possibly be the first line of defense in our fight, however, concern was expressed about its side effects. IVIg was also considered and discussed at length as a very viable treatment as well.
On a personal note, the day concluded with a wonderful dinner where the doctors and the IPPF surprised Janet with an award, a plaque, and a letter that Will had secretly gathered from Dr. Steve Katz, Director of the National Institute of Arthritis, Muscular and Skin Diseases (NIAMS). Janet says, “I was humbled and honored, and I thank everyone for their respect and support.”
Day 2 and 3 continued on with discussion about stem cells, epidermal renewal, mechanisms of acantholysis (loss of cell cohesion), how the immune system responds in pemphigus, and the continuation of targeted therapies for our diseases. After 3 grueling days of discussions, Prof. Muller rented a boat in the nearby town of Murten for a dinner cruise. Everyone who attended let their “hair down,” danced, and sang karaoke as they cruised around the Lake of Murten. A good time was had by all.
Janet reports that, “It was a gift and an honor to be included alongside such distinguished physicians and researchers in the field. Although some of the science was over my head, everyone treated me and my opinions as valuable contributions to the conversation. I am awed to have been in such esteem company. If anyone is going to find the answers for us, it will be these special, dedicated people who have decided that we are worth it.”
Special IPPF thanks go to Janet for always representing the needs of the patients so ably!