Elevating Awareness of the Pressing Needs of the Pemphigus Community

ROSEVILLE, Calif. - March 18, 2021 - PRLog -- The International Pemphigus & Pemphigoid Foundation (IPPF) has published a white paper, "Elevating Awareness of the Pressing Needs of the Pemphigus Community," in response to the results of a Patient Forum held on October 2, 2020, as part of their Virtual Patient Education Conference: "Creating a Brighter Future Together." The Patient Forum was sponsored by Principia Biopharma, a Sanofi Company, and brought together pemphigus patients, caregivers, patient influencers, healthcare professionals, thought leaders, and advocates to discuss the most important disease-related topics affecting the pemphigus community. The white paper discusses the consensus reached by the speakers and panelists of the Patient Forum related to the most urgent needs facing the pemphigus community, and it includes decisive calls to action.

During the Patient Forum, panelists discussed their experiences with delayed diagnoses and the physical, mental, and financial impact of pemphigus. The consequences of a delayed diagnosis to a patient's health and well-being can be significant, therefore the speed and accuracy of diagnosis must be improved. Speakers discussed the high dosage use of corticosteroids and limited treatment options for pemphigus, which makes it clear that new treatment options are needed. In response to the need for new treatments, scientists in academia and the biopharmaceutical industry are currently working to refine and expand treatment options that are more tolerable and targeted.

Based on the urgent needs discussed during the Patient Forum, the panelists and speakers agreed on the following calls to action:

1. Elevate awareness of pemphigus and the patient journey and perspective among key audiences, including clinicians, thought leaders, government agencies, and lawmakers, among others.
2. Increase awareness of ongoing clinical trials of promising investigational candidates to improve participation in trials, with the goal of developing more effective and well tolerated treatments for pemphigus.
3. Improve affordability of and access to therapies.

Access the white paper here (https://go.pemphigus.org/elevating-awareness-pemphigus-wh...) for an in-depth analysis of the challenges facing pemphigus patients during both diagnosis and treatment.

About Pemphigus
Pemphigus is a group of rare, serious, and potentially life-threatening autoimmune disorders characterized by painful blistering of the skin and mucous membranes. The blistering occurs because of an immune response that results in autoantibodies attacking the proteins that bind the cells of the skin and mucous membranes.

About the International Pemphigus and Pemphigoid Foundation
The IPPF's mission is to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support. Its most important objective is to provide patients and doctors worldwide with information about these diseases. More information about the IPPF is available at http://www.pemphigus.org.