We would like to invite you to be part of our new pemphigus/pemphigoid Programme de gestion de la santé. This program was specifically designed at Centric Health Resources with the help of the IPPF Medical Advisory Board members and staff. With this information, we will be creating a registry of information about the impact of pemphigus/pemphigoid on patients. This will open the door to improved treatments for current patients and provide information to further the chances of finding treatments with less negative impacts — for generations to come.
Many of you already know me as Director of Patient Services for the IPPF and a pemphigus patient myself. I will be your Entraîneur de santé par les pairs and I will be the person you will be talking with to complete the data collection. After you complete the Enrollment and Consent Form and return it to the IPPF, I will call you to set up an appointment to complete our initial survey. During our call, which will take approximately 30-45 minutes, I will ask you specific questions about your disease process: what drugs you are on, if any; what side effects you might be having; additional health problems that might have occurred due to treatment, etc.. Depending on where you are with your disease process that will determine any follow-up contacts. We expect that through this relationship and with the additional support materials for you, your caregiver and your doctor, you, personally, will achieve better health and improved quality of life.
This is a voluntary program, but we need your participation to be successful. Your participation is critical to achieving these goals. Whether you have active disease or not, we need you to help us gather information to help future patients with diagnosis, treatment and cure. The Enrollment and Consent Form and a brochure outlining information about the program are on our website at www.pemphigus.org/hmp or we can mail them to you. If you decide to enroll, additional documents will be sent to you. This Health Management Program will help to increase knowledge about pemphigus and pemphigoid, which will ultimately lead to more funding toward research to find a cure.