Dear GlobalSkin Members:

As President of the International Alliance of Dermatology Patient Organizations (GlobalSkin) I want to say thank you to all of our members who joined us at the GlobalSkin 2019 Conference in Milan, Italy this past June.

The Globalskin 2019 Conference brought together over 120 patient leaders, industry representatives and other stakeholders for an incredible several days. The expert-led sessions provided collaborative learning experiences that flowed beyond the conference spaces into shared meals, networking and back to our respective organizations. For this, I thank you. Thank you, not only for sharing your knowledge and experiences, but also for sharing your challenges and for welcoming ideas and insights from other patient leaders....

GlobalSkin is proud to have represented its Member organizations at the 24th World Congress of Dermatology (WCD) this past June in Milan, Italy. With a booth located in the Patient Organization Village, the GlobalSkin Team connected with dermatologists, researchers and other stakeholders to inform them of the essential work being undertaken by you, our Members. Brochures, reports and other materials that our delegates shared with us were displayed and handed out at the WCD’s Patient Village.

On June 11, 2019 GlobalSkin hosted the Skin Matters Reception in Milan, Italy. This was a vibrant networking experience wherein guests heard about the work GlobalSkin is undertaking to transform the way the world understands dermatological diseases. 

GlobalSkin CEO Christine Janus, traveled to Barcelona Spain in early July to attend the International Federation of Psoriasis Associations (IFPA) Members Meeting where she had the opportunity to present GlobalSkin to IFPA Members and provide an update on the Global Research on the Impact of Dermatological Diseases (GRIDD) Project. Learn more about what is new with GRIDD in the Research update below.

Since the RareDERM Forum in Milan last month, we have been busy following up on key activities including a summary document (to be published soon); the formation of advisory committees of patient organizations to complete next steps involving strategic planning; and set up an online collaboration tool for the patient leaders. We will keep you updated as next steps are made. In the meantime, please be sure to check out our event photo album and download presentations from the Forum.

GlobalSkin is now 150 Members strong! This follows nearly 50% growth since January 1st. We have recently welcomed members from four new countries — Portugal, Serbia, Sweden, and Argentina. The Asociación Civil para el Enfermo de Psoriasis (AEPSO), is our 150th Member organization. AEPSO president, Silvia Fernández Barrio was a delegate and speaker at the GlobalSkin 2019 Conference in Milan this past June.
Welcome to all our newest Members, we look forward to collaborating with you all!

We have made significant progress on the Global Research on the Impact of Dermatological Diseases (GRIDD) project this year. Phase 1 recently concluded with the completion of our Systematic Literature Review. Our researchers at Cardiff University and the University of Hamburg have just this month submitted the manuscript of results and conclusions to a well known dermatology journal.  Watch this space for exciting news about the publication!

Phase 2,  the qualitative research to identify issues that describe impacts of disease (or in researcher terms,’ items’) for the creation of our research questionnaire, has begun. Our researchers hosted a focus group workshop in Milan with patient leaders and collected very rich and detailed information which they are now analyzing. The next steps will be validation of this data and then development of the questionnaire itself. More to come on this as we actively work to get patient groups involved in this ground-breaking research