Congenital melanocytic nevi represented in a new coalition

As small patient organizations, we don’t achieve much when it comes to policymaking, research, and drug development. That’s why it’s important to connect.

May 25, 2022 – Geneva. Today, a patient-led multi-stakeholder group of like-minded organizations – including dermatology patient organizations, health care professionals (dermatologists and dermatology nurses), researchers, and industry – announced the formation of the Global Dermatology Coalition. This announcement comes during the 75th World Health Assembly in Geneva, as a first step in changing perceptions about the often-severe impacts of these diseases and elevating their prioritization in health policy both at the global and country levels.

 

 

Skin, the largest and most visible organ of the body, plays a key role in protecting other organs from the outside world, while at the same time, is vulnerable to attack. This vulnerability can lead to highly burdensome and sometimes lethal dermatological conditions. Diseases of the skin, mucosae, nails, and/or hair are a leading cause of global disease burden (GDB)1. They affect nearly 900 million people in the world at any time and are the fourth most frequent cause of human illness globally1. Dermatologists diagnose and treat more than 3,000 different diseases, including atopic eczema, psoriasis, vitiligo, albinism, acne, alopecia, and thousands of rare skin diseases2. Dermatological diseases cause substantial pain, disfigurement, disability, and stigma while they also lead to significant psychological, social, and financial burdens. These diseases can be inflammatory, infectious, and malignant, and are among the most prevalent and disabling disorders, particularly in low resource countries.
Despite the substantial scale of this health burden, these diseases, unlike other non-communicable Diseases (NCDs) or neglected tropical diseases (NTDs), do not receive the global policy prioritization they deserve. Because skin diseases can occur at any age, they have a profoundly negative impact on the health and wellbeing of patients, their caregivers, and families all around the world. Due to their lifelong nature, dermatological conditions lead to sustained economic costs and can pose threats to healthcare systems.

“Collaborative action is needed to change the hard reality faced by skin patients and for this reason, we have established the Global Dermatology Coalition. Together, our organizations are actively working to improve patient outcomes globally. This would mean improved access to the diagnosis, care, and treatments they need when they need it – no matter where they live in the world,” said Jennifer Austin, CEO of the International Alliance of Dermatology Patient Organizations (also knowns as GlobalSkin). “The Coalition speaks as one voice for these patients, their caregivers, and their families because they deserve to live without stigma, for their diseases not to be minimized, and to achieve a higher quality of life.”

The Global Dermatology Coalition is comprised of the following organizations:

CMTC-OVM
Cutaneous Lymphoma Foundation
Dermatology Nurses Association
European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)
European Society for Dermatological Research (ESDR)
Europso
International Federation of Psoriatic Disease Associations (IFPA)
International League of Dermatological Societies (ILDS)
International Alliance of Dermatology Patient Organizations (GlobalSkin)
International Pemphigus Pemphigoid Foundation (IPPF)
La Roche-Posay International
Lupus Europe
Naevus Global
Pediatric Dermatology Research Alliance (PeDRA)
Pfizer
Regeneron
Sanofi Genzyme