The IPPF has published a white paper focusing on the urgent needs of pemphigus patients.

March 16, 2021
The IPPF is excited to announce the publication of a white paper, “Elevating Awareness of the Pressing Needs of the Pemphigus Community.”  This paper is in response to the results of a Patient Forum held as part of our Virtual Patient Education Conference last October. 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 related to the most urgent needs of pemphigus patients. It also 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.

The white paper provides an in-depth analysis of the challenges facing pemphigus patients during both diagnosis and treatment.