June 2022

The Global Research on the Impact of Dermatological Diseases (GRIDD) project continues to make considerable progress, due in large part to our Members engaging their patients in this important research.  
 
The project is now in the final stages of testing the pilot Patient-Reported Impact of Dermatological Diseases (PRIDD) measure.  We are once again reaching out to GlobalSkin Members, from a broad cross-section of dermatological diseases and regions, to ask that you encourage your patients to get involved. 
 
This phase of the project is a test / re-test survey, meaning that adult dermatology patients will be invited to take a 10–15-minute survey in English and then will be asked (via direct email) to re-take the survey in two weeks’ time. The surveys will include PRIDD and a few other validated questionnaires as well as some questions about you, such as your age, gender, which dermatological condition you have, and in which country you live. 
 
The surveys will test the reliability of the pilot PRIDD measure over time. The survey will be live on June 29, and we are looking to engage 500 patients across all diseases and regions. GlobalSkin Members will receive an email with materials to help reach your patient community and encourage their participation in this study.  

GlobalSkin thanks our Members and their patient communities for considering our request for participation. You will be making an important contribution to improving the lives of dermatology patients around the world now and in the future. 

GlobalSkin’s Annual General Meeting (AGM) took place on Wednesday, June 22. The AGM was an opportunity for Members to hear the President’s Report and to vote on important governance items including GlobalSkin’s updated bylaws, articles of amendment, and audited financial statements. As part of the event, GlobalSkin hosted a Member Townhall where we presented GlobalSkin’s new draft 2023-2027 Strategic Plan. Members participated in meaningful discussions related to the Strategic Plan. We thank all Members for their interest and contributions. The next step will be for the Board to consider this feedback, finalize and then vote on the final plan.

For Members who could not be in attendance, the President’s Report and Townhall were recorded and are available in the Members-Only section of our website along with important documents related to the AGM. Please login to watch the replay. 

On June 22, the GlobalSkin Board Election concluded and results were announced during the AGM. Congratulations to Marc Yale (International Pemphigus and Pemphigoid Foundation), Michelle Capon (Canadian Association for Porphyria) who were re-elected and Tran Hong Truong (PSORVIET) who was newly elected.    

We thank all Directors for their service and commitment to the GlobalSkin Board. We particularly wish to express appreciation to Jean-Marie Meurant, GlobalSkin’s Founding Board President and longest serving Director for his many years of service to the Board and our organization – particularly during its formative years. Thank you also to Vlasta Zmazek and Ito Daisuke for their important contributions to the GlobalSkin Board during their terms.

GlobalSkin staff and Members of the GlobalSkin RareDERM Community were in Paris in early June for the first-ever World Congress on Rare Skin Diseases, organized by the European Reference Network (ERN) Skin and La Fondation René Touraine (FRT).

GlobalSkin with ERN-Skin European Patient Advisory Group, co-hosted a patient-focused panel session – Building Global Innovative Collaboration for Improved Quality of Life for Patients – to open the event. In their capacity as members of the ERN-Skin European Patient Advisory Group Working, GlobalSkin Members Antoine Gliksohn (Genespoir – association française des albinismes) and Marie-Claude Boiteux (Cutis Laxa Internationale) collaborated with GlobalSkin to organize and co-host the event.

A robust program, featuring multi-stakeholder presentations and a panel discussion showcased patient collaboration successes to a full room of healthcare professionals. We were honoured to have Durhane Wong-Reiger, Chair, Rare Diseases International, thoughtfully guide us through the session as our moderator. 

As we continue to grow GlobalSkin’s RareDERM Community, we are grateful for the opportunity to collaborate with ERN Skin and look forward to participating in World Congress on Rare Skin Diseases 2024.   

The Atopic Eczema Community continues to map its future priorities. Members met in May for two online workshops where they reflected on the achievements of the past three years and discussed what the community’s strategic objectives need to be for the coming years. Next steps include creating a multi-year Community Plan to be reviewed by the Advisory Committee and then shared with the larger GlobalSkin Atopic Eczema Community by end of year. 

GlobalSkin-Europe Members met for an informal Coffee Chat in early May and the GlobalSkin-Europe Advisory Committee met to talk about community priorities on June 10. These meetings allowed for open and timely discussions between patient leaders, and we continue to receive positive feedback from Members regarding these opportunities. We thank you, our Members for your meaningful contributions at these meetings.  
 
GlobalSkin is excited to be headed to Milan in September for the European Academy of Dermatology and Venereology (EADV) Congress. We look forward to networking opportunities and to connecting with GlobalSkin Members during that event. Plans are underway for a European Member meeting during the Congress; more details will be shared in the coming weeks.     
 
Patient organizations participating in the Congress are invited to take part in the Patient Village, attend a patient session co-hosted by the EADV and GlobalSkin on shared decision-making as well as a GlobalSkin reception. If Members of the GlobalSkin-Europe Community cannot attend in person, they are encouraged to register for Virtual Patient Organisation Profile - registration closes on July 1, 2022.