International Pemphigus & Pemphigoid Foundation

07/27/2026

The IPPF and the Canadian Skin Patient Alliance (CSPA )is inviting people living with bullous pemphigoid (BP), as well as family members and caregivers, to take part in a short survey about their experiences.

Living with BP can affect many aspects of daily life, and we want to better understand the challenges, concerns, and priorities of the people most affected by this condition. As new treatments are being considered in Canada, hearing directly from patients and caregivers is an important way to ensure that real-world experiences are part of the conversation.

The survey takes about 10 minutes to complete and is available in English and French. As a thank you, participants will be entered into a draw to win one of two $50 gift cards to a retailer of their choice.

To participate, please scan the QR code or use the links below:
English: https://forms.cloud.microsoft/r/bGLRmYwRbT
French: https://forms.cloud.microsoft/r/4ULdGY7kG0

Our open surveys page can be found here:
English: https://www.canadianskin.ca/research/open-surveys
French: https://apropeau.ca/recherche/enquetes-en-cours

Your voice can help us better represent the needs of the BP community and support efforts to improve access to care and treatment.

07/27/2026

Today, is the final day to book your room at the voco Chicago Downtown – Riverwalk at the special IPPF discounted rate!

Don't miss your chance to save on your stay for the 2026 IPPF Patient Education Conference in Chicago, August 28–30!
Join fellow patients, caregivers, and healthcare professionals for a weekend of education, support, and meaningful connections with others who truly understand the pemphigus and pemphigoid journey.

Book your hotel before the room block closes tonight.
Register for the conference if you haven't already! https://fundraise.pemphigus.org/2026-ippf-conference
We can't wait to welcome you to Chicago!
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07/15/2026

Register now for the next ERN-Skin Webinar!

Join us on Thursday, July 30, 2026, from 5:00–6:00 PM CET for an informative webinar hosted by the ERN-Skin AutoImmune Bullous Diseases (AIBD) Thematic Group.

This session will feature two presentations on bullous:
“Over-mortality in bullous pemphigoid patients in the first 6 months after diagnosis: insights from a cohort study”, presented by Carmen Glück, Würzburg.
“Drug survival in bullous pemphigoid”, presented by Leon Johannsen, Würzburg.

It will be chaired by Marc Yale Research & Policy Advisor at International Pemphigus Pemphigoid Foundation.

Co-organized by ERN-Skin AIBD thematic group and patient association IPPF (International Pemphigus & Pemphigoid Foundation).

Join us and Register Here: https://ec.europa.eu/eusurvey/runner/ERN-Skin_Webinar-AIBD-30_7_2026

07/14/2026

Marc Yale, IPPF Research and Policy Advisor and International Alliance of Dermatology Patient Organizations - GlobalSkin Board President recently traveled to France to represent rare skin disease patients at the World Congress on Rare Skin Diseases (WCRSD) in Versailles, France!

GlobalSkin was proud to join researchers, clinicians, policymakers, and patient advocates from around the world to champion the importance of meaningful patient engagement in rare skin disease care. , , ,

🌍 That's a wrap on an incredible few days at the World Congress on Rare Skin Diseases (WCRSD) in Versailles, France!

GlobalSkin was proud to join researchers, clinicians, policymakers, and patient advocates from around the world to champion the importance of meaningful patient engagement in rare skin disease care.

Over the course of the congress, we:
✨ Co-hosted the WCRSD Welcome Reception alongside WCRSD
🎤 Partnered with ERN-Skin PAGS to deliver a main stage plenary session exploring the validated mental health burden of living with a rare skin condition
🤝 Connected with attendees at our booths, where visitors learned about PRIDD and engaged with patient organizations from across the rare skin disease community
🌟 Supported 14 GlobalSkin Members to attend WCRSD and hosted an exclusive RareDERM Community side event, strengthening connections and highlighting the power of collaboration

Thank you to everyone who visited us, attended our sessions, and contributed to important conversations throughout the congress. Together, we continue to amplify patient voices and advance better care for people living with rare skin diseases.

07/13/2026

Planning to join us in Chicago for the 2026 IPPF Patient Education Conference? Don't wait to reserve your room!

Our discounted room block at the voco Chicago Downtown – Riverwalk closes in 2 weeks, on Monday, July 27. After that, the special conference rate will no longer be available.

Reserve your hotel room , register for the conference, and get ready to join us for an inspiring weekend of learning, hope, and community. We can’t wait to welcome you to Chicago! https://fundraise.pemphigus.org/2026-ippf-conference

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07/09/2026

One Weekend Could Change How You Manage Your Disease!

Whether you're living with pemphigus or pemphigoid, caring for a loved one, or supporting patients, this conference is your opportunity to learn from leading experts, connect with others, and leave feeling informed and empowered.

To share why this event matters, our conference host, Dr. Kyle Amber, has recorded a special invitation for the pemphigus and pemphigoid community. https://www.youtube.com/watch?v=LoFXqURY4Ds

Register today for this life-changing weekend: https://fundraise.pemphigus.org/event/2026-ippf-patient-education-conference/e771841

We can't wait to see you there! , ,

Dr. Kyle Amber, host of IPPF's 2026 Patient Education Conference, i...

06/25/2026

🏙️ YOU'RE INVITED TO CHICAGO!

What if you could spend one weekend learning from leading experts, connecting with others who understand your journey, and gaining the knowledge and confidence to better manage your disease?
That's exactly what you'll find at the 2026 IPPF Patient Education Conference, taking place August 28–30 in Chicago, Illinois. https://fundraise.pemphigus.org/2026-ippf-conference

During this year's conference, you'll have the opportunity to learn about:
• Understanding your treatment options for pemphigus and pemphigoid
• Managing symptoms, side effects, pain, and itch
• The latest research breakthroughs and emerging therapies
• Clinical trials and the role patients play in advancing research
Most importantly, you'll connect with a community that understands the challenges—and triumphs—of living with these rare autoimmune diseases.

Register today and join us in building a stronger future for our community. https://fundraise.pemphigus.org/2026-ippf-conference
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06/15/2026

Today is your final opportunity to take advantage of early-bird pricing for the 2026 IPPF Patient Education Conference. Don’t miss the chance to secure your spot at a discounted rate! https://fundraise.pemphigus.org/2026-ippf-conference

This conference is more than an educational event—it’s an opportunity to connect with a community that understands and supports you. Register today to lock in your savings and ensure your place at this inspiring gathering. We look forward to welcoming you to Chicago! , ,

06/02/2026

A huge thank you to our Event Level Sponsors, Cabaletta Bio, CSI Pharmacy, GlycoEra, InfuCare Rx, Rush University, and Soleo Health for supporting the 2026 IPPF Patient Education Conference!
Your partnership helps make it possible for and patients, caregivers, and healthcare professionals from across the country to come together for a weekend of education, connection, and hope. Together, we're building a stronger, more informed, and more connected community.
Learn more about the conference and register today: https://fundraise.pemphigus.org/2026-ippf-conference


www.cabalettabio.com, https://csipharmacy.com, www.glycoera.com, https://infucarerx.com, www.rush.edu/services/dermatology-services, www.soleohealth.com

05/28/2026

Don't forget to register and join us for the next Scientific Seminar Series webinar on June 1st!

The Scientific Seminar Series is a scientific educational program with experts from various international institutions that present on their scientific findings on and . For more information and to register, visit: https://zoom.us/webinar/register/WN_UDveg3reRxCegyB9YFzMWQ
Topics for this month's seminar:
"Utility of C3d and C4d immunohistochemical staining in formalin-fixed skin or mucosal biopsy specimens in diagnosis of bullous pemphigoid and mucous membrane pemphigoid"- Dipankar De, MD, Department of Dermatology, Venereology and Leprology, Post Graduate Institute of Medical Education and Research, Chandigarh, India
"Conversion of pathogenic T cells into functionally stabilized Treg cells for antigen-specific immunosuppression in pemphigus vulgaris"- Hayato Takahashi, M.D., Ph.D., School of Medicine Dermatology Associate Professor, Keio University, Tokyo, Japan See less