The generalized pustular psoriasis (GPP) Forum 2023

Developments on the generalized pustular psoriasis (GPP) Charter

Recapping on the GPP Charter development, the key output from the first GPP Forum, attendees were reminded of the four calls to action that set out to:

1. Increase GPP awareness as a rare, unpredictable, and life-threatening autoinflammatory, systemic disease that is distinct from plaque psoriasis
2. Improve accurate and timely diagnosis by a dermatologist with GPP expertise by setting benchmarks for the identification, management, and long-term care of GPP
3. Drive education around the need for appropriate and specific treatment of GPP
4. Establish excellence in support services to connect the GPP community and improve the patient experience

The GPP Charter provides a framework to align stakeholders’ activities under one GPP agenda and drive opportunities to interact with each other to reshape how GPP is perceived and supported moving forward – you can learn more about the GPP Charter here.

Chaired by Paul Mendoza, President of Psoriasis Philippines, the second GPP Forum’s aim was to identify ways to improve collaboration across the globe, ultimately sharing experiences to fulfil the GPP Charter action points

Over recent months, many of the Forum attendees have kick-started important and effective projects with the aim of improving GPP awareness and support. The Forum therefore provided an ideal opportunity to bring these initiatives to a wider audience and discuss ways to improve outcomes for people living with GPP, leveraging the Charter as the thread to unite and amplify these activities.

Leaders of GPP initiatives shared their projects as inspiration for breakout groups where further ideas to strengthen the Charter were discussed.

Read more here about projects led by patient organizations and dermatologist groups.

Bringing extensive knowledge from multiple disciplines and expertise enabled the Forum’s breakout sessions to draw on the participants’ perspectives and define goals to identify realistic actions. The main focus for setting, and identifying, ways to meet the goals was centered around the Charter’s first and fourth action points: Raising awareness and connecting the GPP community to improve collaboration and support.

GPP Forum 2023 breakout discussion outputs

The GPP Forum breakout sessions concluded the following actions to support the GPP Charter moving forward.

GOAL 1: Raise awareness of the key signs and symptoms of GPP among HCPs and those who may be affected

TACTIC:

• Develop a “GPP Assessment Tool”, a checklist (including supporting images) that HCPs and potential patients can use to support GPP screening and assessment
• The Tool must include diverse geographical representation, as well as presentation of GPP in different skin tones to ensure inclusivity

EXECUTION

• The Tool can be informed by similar resources that are available for plaque psoriasis and psoriatic arthritis
• When available, patient organizations, international psoriasis groups and dermatology associations could share the Tool via their website and social channels

GOAL 2: Obtain formal rare disease designation for GPP

TACTIC:

• As a first step, work collaboratively to pool existing data on GPP to generate robust, evidence-based information on the condition
• Doing so will improve understanding of GPP, and will provide the required data to support the case for granting rare disease designation
• Such data can also be used to inform areas for future research and collaboration

EXECUTION

• Opportunity to leverage international registry data (e.g., IRASPEN) as part of efforts to create a consolidated dataset
• Once granted, rare disease designation can support treatment reimbursement at a country level (e.g., China)

GOAL 1: Optimize patient identification in GPP

TACTIC:

• Assign a resident HCP GPP expert within every psoriasis patient organization to support development of GPP-specific educational resources for dermatologists and the multi-disciplinary teams managing people living with GPP

EXECUTION

• IFPA to reach out to members, prompting them to add GPP information to their website, with the support of a local GPP expert.
• Regional patient organizations could share information with local doctors, who can circulate resources to newly-diagnosed patients, as well as referring them back to the organization for further support
• Successful implementation will allow patients to share their stories and experiences, and encourage other patients to do the same

GOAL 2: Reduce time to diagnosis in GPP

TACTIC:

• Drive HCP enrolment and participation in a GPP masterclass, targeting family physicians, emergency specialists, and pharmacists

EXECUTION

• Leverage GPP masterclasses that are already in existence to raise awareness of the condition’s key signs and symptoms, supporting prompt diagnosis and management of people living with GPP
• Important to include HCP follow-up as part of tactical implementation; HCPs are unlikely to retain the information if they are not regularly encountering patients with GPP

GPP Charter related projects

The GPP Forum has created a blueprint for adaptation across the world. As an example, Antonella Scali, Executive Director of the Canadian Psoriasis Network, shared how the global GPP Forum will be tailored for Canada. As part of a collaboration with the Canadian Association of Psoriasis Patients, and the Canadian Skin Patient Alliance, the program will create a session focused on the unique challenges faced by people living with GPP in Canada, as well as to showcase local initiatives to advance the GPP Charter and inspire further progress in Canada.

As all the existing and new collaborative projects are shared and adapted for different groups and regions of the world these will feature in more detail here over the coming months.