The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) – is a unique global alliance serving patient organizations to improve the lives of dermatology patients worldwide. GlobalSkin was established in June 2015 when 125 delegates from 25 countries, representing 60 skin patient organizations, met and agreed to “the establishment of a global umbrella organization to serve the needs of people living with dermatological conditions.”1
GlobalSkin's work focuses on the areas of research, advocacy and support. Its membership is now over 300 member organizations - located in 74 countries representing more than 59 disease areas. It represents the voice of its members to appeal to the World Health Organization and other key influencers to recognize the debilitating nature of dermatological disease.
1 Source: https://www.eu-patient.eu/news/latest-epf-news/2021/globalskin-joins-epf/
The Cutaneous Lymphoma Foundation traces its partnership with GloblalSkin back to its inception. Our CEO was one of the founding board members as well as a former Board Vice Chair. We are proud to have played a role in two of GlobalSkin's major projects: the Patient-Reported Impact of Dermatological Diseases (PRIDD) and the Global Research on the Impact of Dermatological Diseases (GRIDD).
The Cutaneous Lymphoma Foundation currently holds the following committee positions within GlobalSkin:
Susan Thornton, CEO - Finance & Risk Committee
Holly Priebe, COFO - Conference Committee
As GlobalSkin explored how it and its member organizations could improve their advocacy efforts for their constituents, it became clear patient-reported data was key. However, while decision makers and Health Technology Assessments (HTA) see the value in patient-reported data, most of what existed at the time was anecdotal, and decision making criteria requires measurable data.
GlobalSkin and its member patient leaders asked: What if there was a quality of life measurement tool that was developed by patients? What if a credible patient voice could be built upon verifiable data? And, what might it mean if policymakers wouldn’t ever make a decision without including a patient-led measure?
These questions led to the following projects that the Cutaneous Lymphoma Foundation was proud to be a part of:
Patient-Reported Impact of Dermatological Diseases (PRIDD)
Global Research on the Impact of Dermatological Diseases (GRIDD)