What to Expect at Our Annual Patient Conference
After being diagnosed with mucous membrane pemphigoid in 2007, I attended my very first IPPF patient conference in Dallas, TX. At first, I was a little apprehensive about attending because I just didn’t know what to expect. The only other patients whom my wife and I had seen were in photos on the internet, and I was afraid that I might show up to a room full of people looking like those pictures. We carefully read through the meeting agenda, saw all the topics that would be presented by the most prominent physicians in the field, and decided to take a leap of faith and attend. Looking back, I am so glad we did as it helped me realize that I was not alone and that there was a light at the end of the tunnel.
On September 22nd, the IPPF will kick off its 19th Annual Patient Conference in Austin, TX. This year’s conference promises to be one of our best yet as we are highlighting the most recent research advances in the fields of pemphigus and pemphigoid. Dr. Aimee Payne, a dermatologist at the University of Pennsylvania, will be our keynote speaker on Thursday night at the Annual Awards Dinner, where she will share her perspective on pemphigus and pemphigoid research. Afterward, you will have the chance to make new friends while helping to raise funds for the foundation at our casino night, where you could win some amazing prizes.
On Friday, we will pick up where we left off, discussing additional promising research and discovery opportunities that may lead to new treatments and a cure. Expert physicians from around the country will share information about treatment strategies, genetic correlation and oral care solutions. After lunch, there will be a wide-range of interactive workshops from which to choose on topics that are important to improving your quality of life. We will end the day with a chance for you to participate in a panel discussion and then leave enough time to get together with family and friends to enjoy Austin’s sights and nightlife.
Saturday’s half-day day session is devoted to your experience as a patient. We will spend the morning sharing stories, providing patient-to-patient education, and exploring the mind-body connection of the disease with Dr. Roy Vongtama. We will show you how creating awareness and self-advocating can empower you to improve your condition and support others.
Recently, I asked Mary Lee Jackson, a 13-time return attendee of the conference, “Why do you attend this conference year after year?” She told me that she comes back to hear what’s new with the disease and because she enjoys seeing her pemphigus and pemphigoid family. This year, more than any other year, you will have a chance to hear what’s new in discovery and meet others who know how you feel.
Join us in September and help us with our vision of finding a cure for pemphigus and pemphigoid!