Implementing the generalized pustular psoriasis (GPP) Charter

Implementing the GPP Charter: Psoriasis Philippines

The PsorPhil-GPP CARE Project was conceived to improve the care of Psoriasis Philippines’ members with generalized pustular psoriasis (GPP) and was co-developed with a board-certified dermatologist. Focusing on three key areas comprising consolidated assistance, registry and education, the team developed activities to deliver on the CARE Project objectives: 

• Consolidated assistance: GPP PsorCoach peer-to-peer support; liaising with the Philippine Society for Orphan Disorders; and developing a GPP Rescue Program to support GPP patients in hospital with future expansion to teledermatology  
• Registry: A patient-powered registry to support rare disease research and establish a GPP trials network
• Education: Regular patient/caregiver meetings; GPP MD Councilors group to provide healthcare professional advice and support for GPP patients 

* Supported by Boehringer Ingelheim 

Implementing the GPP Charter: Psoriasis Association Malaysia

The GPP Patient Support (GPS) Navigator Program:

• The GPS Navigator program trains volunteer ‘Navigators’ who provide psychosocial, health literacy, and emotional support to people living with GPP
• The program is part of a multidisciplinary partnership of patient organizations, GPP specialist centers and medical societies to support patients at each step of their GPP journey
• GPS Navigator addresses patients’ needs for emotional support, access to information and community through life with GPP

Implementing the GPP Charter: IFPA

Project Rare GPP: Community support:

• The Project Rare GPP* fund was launched by IFPA in 2023, providing patient organizations with the opportunity to seek financial support for projects looking to increase the quality of life and wellbeing for those affected by GPP 
• Projects are prioritized according to impact, reach and collaboration and the three-year program will award grants on a regular basis  
• In 2023, Project Rare GPP dedicates support for patient organizations that connect and improve wellbeing and the quality of life of those affected, lead research projects to improve patient experience, or participate in educational/networking events 

* Supported by Boehringer Ingelheim 

Other projects that are delivering on the GPP Charter

In addition to the many patient-led initiatives presented during the GPP Forum in 2023, Dr Siew Eng Choon shared her insights on several dermatologist-led projects. These included her involvement in the upcoming Malaysian NAVIGATOR Project activities, the Asia-Pacific Consensus which is developing guidelines for the management of GPP*, and the International Rare And Severe Psoriasis Expert Network (IRASPEN), which is expanding to centers in Malaysia soon.

Dr Choon also presented important global collaborative initiatives that are helping to drive consensus on GPP definition, diagnosis and treatment goals: 

• The International Psoriasis Council’s Working Group on Pustular Psoriasis, co-chaired by Dr Choon, has initiated a series of publications, symposia and internationally agreed definitions to improve GPP patient care
• As a member of the PIONEERS Global Expert Working group*, Dr Choon presented her perspective on the integral significance of convening leading GPP experts to advance excellence in GPP and pave the way for improved patient outcomes via:
  • Comprehensive GPP virtual Masterclasses (PIONEERS 360) to upskill dermatologists
  • GPP clinical case vignette publication
  • Delphi consensus on GPP: clinical course and flare definition; diagnosis; treatment goals; and holistic management
  • Literature reviews on prevalence, comorbidities and mortality, and GPP treatment
  • PIONEERS Live standalone educational event

* Supported by Boehringer Ingelheim