A key component of GlobalSkin's mission is to build connections and opportunities for collaboration within the dermatology community. Bringing the patient perspective to the forefront is top of mind for GlobalSkin's Leadership Team and Board of Directors. As part of GlobalSkin's reach and expertise, representatives have been invited to sit on several key committees, working groups and task forces.
GlobalSkin has transitioned from being an Observer Member to becoming a Full Member of the Patient and Consumer Working Party (PCWP) at the European Medicines Agency as of April 2024. We're enthusiastic about our increased involvement in this major European regulatory body and are committed to contributing even more actively as Full Members of the PCWP. Read more about the status here.
In April 2024, GlobalSkin became a member of the NCD Alliance, a civil society network with 300+ members in 80 countries dedicated to improving noncommunicable diseases prevention and control worldwide. We look forward to connecting on and supporting efforts leading up to the Fourth High-level Meeting of the UN General Assembly on the Prevention and Control of NCDs and Mental Health in September 2025.
On March 25, 2024, GlobalSkin became an associate member of EURODIS, a unique alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. GlobalSkin aims to aid in strengthening the patient voice and help shape research, policies and patient services as part of this membership.
Other Committee Memberships Include:
- RDI--WHO Collaborative Global Network for Rare Diseases Programme (CGN4RD)
- In 2021, Rare Diseases International launched CGN4RD Panel of Experts, an inclusive and global body composed of patient advocates, clinicians, researchers and health professionals from all six WHO regions.
The Panel of Experts will provide input to help the WHO Collaborative Global Network Programme develop pilots that address the shared and specific challenges of people living with a rare disease around the world.GlobalSkin Programs Director Tammi Shipowick and Board Treasurer Marc Yale (International Pemphigus & Pemphigoid Foundation (IPPF), will participate on this panel.
- In 2021, Rare Diseases International launched CGN4RD Panel of Experts, an inclusive and global body composed of patient advocates, clinicians, researchers and health professionals from all six WHO regions.
- Global Psoriasis Coalition - A program of the International Federation of Psoriasis (IFPA), inspired by developments in the non-communicable diseases (NCD) policy agenda that calls on civil society to advocate for a people-centered and integrated response to psoriasis.
- PeDRA Patient Advisory Committee - The charge of the Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA-PAC) is to inject the perspectives and priorities of patients and parents into PeDRA’s research activities, and to identify high-priority, cross-disease studies to be pursued by PeDRA investigators.
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A new research paper (Nov 2022) has been published on our recent collaborative work. View the publication here.
- The Committee created a poster about their efforts which was shared during PeDRA's Annual Conference 2021. View the poster here.
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GlobalSkin is a Member of:
- International Alliance of Patient Organizations (IAPO)
- European Patients Forum (EPF)
- Rare Disease International (RDI)
- Global Genes
- Coalition of Skin Diseases (CSD)
- World Patient Alliance
- EURORDIS
- NCD Alliance
