Rare dermatological diseases patient organisations leading the way in community building and skills development
Last month, over 120 leaders of patient groups that support people living with skin diseases came together in Milan for two unique events hosted by the International Alliance of Dermatology Patient Organizations (also known as GlobalSkin): the RareDERM Forum and the GlobalSkin 2019 Conference.
The RareDERM Forum, the first event of its kind, brought together nearly 40 rare and uncommon dermatological disease patient group leaders from 13 countries. Participants benefitted from formal learning sessions and connecting with other patient leaders and dermatology stakeholders.
A primary objective of this two-day Forum was to begin building a cohesive community of rare dermatology disease patient organisations and supporting stakeholders to ensure the lives of these patients are positively and measurably impacted through improved care and treatment. Working in small groups and then as a larger plenary group, participants began developing a strategy that defines challenges and needs; will build a cohesive community to grow knowledge and skills; will help stimulate research, foster connectivity; and deliver advocacy. Several advisory committees were formed within the community and reports on their progress will be shared later this year.
Following this ground-breaking event, most RareDERM patient leaders also attended the three-day GlobalSkin 2019 Conference, which is hosted every second year, and is specifically designed for dermatology patient leaders with a focus on advocacy, science and research, and building organizational capacity resulting in strong, resilient organizations. It attracted over 120 delegates from 35 countries representing a wide cross-section of serious skin diseases. Participants learned from each other and outside experts during stimulating plenaries, engaging workshops, and small group mentorship opportunities through a living library.
To learn more about the RareDERM initiative, please visit the GlobalSkin website. Groups and organisations supporting people living with dermatological diseases are invited to join the global movement for skin by signing up for a no-cost GlobalSkin membership here.
The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a unique global alliance, committed to improving the lives of skin patients worldwide. Together, with our network of over 150 patient organizations, we nurture relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centred healthcare. For more information visit
Rare Revolution Editor