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Elevating Awareness of the Pressing Needs of the Pemphigus Community

Results from the IPPF Patient Forum

The International Pemphigus & Pemphigoid Foundation (IPPF) held an inaugural Patient Forum on October 2, 2020, as part of the 2020 IPPF Virtual Patient Education Conference: “Creating a Brighter Future Together.” The Patient Forum 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.

A total of 541 people from around the world registered for the event and either attended the live session or viewed the recording. For 70% percent of them, this was the first IPPF Patient Conference they attended.

At the conclusion of the Patient Forum, the speakers and panelists reached a consensus on the most urgent needs facing the pemphigus community: 1) improving the speed and accuracy of diagnosis; 2) developing improved treatment options; and 3) improving the affordability of and access to current and future therapies.

Based on these needs, they agreed on the following calls to action:

  • Elevate awareness of pemphigus and the patient journey and perspective among key audiences, including clinicians, thought leaders, government agencies, and lawmakers, among others
  • 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
  • Improve affordability of and access to therapies

Download the white paper for in-depth analysis:

  • Overview of pemphigus
  • Challenges in being diagnosed and living with pemphigus
  • Current state of pemphigus treatment
  • Advances in pemphigus care and the potential role of new therapies
  • Critical topics covered during the panel discussion and interactive Q&A
  • Urgent needs and call to action