For the first time, dermatologists, clinicians, patient organizations, rare disease policy experts, and those living with GPP leveraged their different perspectives to discover how best to support the GPP community.

Speakers took to the stage to open discussions around GPP from their perspectives and to listen to the wider points of view shared by the attendees. Patient advocate, Emmlyou, from her personal GPP experience, talked about life with the condition and the impact on daily and family life. Patient organization representatives, healthcare professionals and rare disease policy experts shared their learnings including insights from rare disease and rare skin initiatives – how to adapt and apply these to GPP. Ultimately the discussions led to the collective possibilities to instigate positive change for people living with GPP.  The goals were mapped out for the steps to improve access to an accurate diagnosis, treatment and healthcare plans.

This collaborative opportunity resulted in the GPP Charter, a set of commitments that will deliver for the aspirations of patient groups, clinicians, and people who live with GPP, while also creating a repository of knowledge, expertise, and policy initiatives. It will raise the profile of GPP to improve diagnosis time, the range of therapies available, access to them and the ability of physicians to diagnose and treat. 

It represents a paradigm shift and the gateway to improved quality of life for people living with GPP.