The 2013 Patient Conference (formerly the IPPF Annual Meeting) was held in San Francisco, California, April 26-28, 2013 at the Hilton San Francisco Airport Bayfront (Hilton SFO) in nearby Burlingame, CA.
CONFERENCE DOWNLOADS AVAILABLE
to access the Audio files (mp3)
Video (the audio and slides together, mp4)
the Official Program
and the Transcripts (pdf)
About the 2013 Patient Conference
Pemphigus and pemphigoid awareness and comprehension have unpredictable and unexpected impacts on the world’s health, especially for marginalized and vulnerable populations. Our independent research shows it takes an average of 5 physicians over 10 months to arrive at a correct diagnosis and begin treatment – and in some cases as many as 10 physicians.Ongoing research in such evolving challenges as inequitable social conditions, access to specialists, emerging and reemerging symptoms, psychological issues related to disease or treatment, and best practices is urgently needed to address these impacts. Moreover, innovative partnerships and coordinated responses from global health stakeholders such as multi-spectrum physician networks, academic institutions, and large-scale medical facilities will be necessary to tackle these issues. Against this background, our patient conference encourages experts in pemphigus and pemphigoid to openly discuss diagnosis, treatment, and lifestyle issues in a forum catering to patients and caregivers. This format promotes an increase in patient self-education and disease awareness that can be shared with their treatment and teams.
The IPPF believes educated patients can make more informed decisions, with the guidance of their physicians, to improve their overall quality of life.
This two-day meeting focused on the patient and explored issues relevant to disease history and pathology, treatment options and side effects, lifestyle and psychological impacts, and wound care management. Sessions were organized according to themes including pre-diagnosis, initial treatment, and living with the disease. Caregivers and family members attended and learned about disease-specific issues and how to work together as an informed support network.
The conference employed an array of activities including plenary lectures, workshops, and receptions and social events, participants ranging from patient and caregivers to students and practicing professionals giving them a chance to exchange knowledge and ideas and work together to advance pemphigus and pemphigoid awareness and education at local, national, and global levels.
The conference was an exciting and educational experience for all involved, from attendees to speakers to sponsors. By coming together in the San Francisco Bay Area to share our expertise and experiences, we moved closer to achieving the goal of an improved disease experience that is truly focused on the patient.