In June 2019, the International Alliance of Dermatology Patient Organizations (GlobalSkin) hosted the first-ever RareDERM Forum for leaders of skin patient organizations (POs) in Milan, Italy. Thirty-eight leaders representing over 20 rare skin diseases from 13 countries attended the two-day RareDERM Forum to work towards an overall objective—build a cohesive community of rare dermatology disease patient organizations and supporting stakeholders around a shared vision which will ensure the lives of these patients are positively impacted in a measurable way. Specifically, community leaders were brought together 1) to develop a global RareDERM network three-year strategy; 2) to build capacity among patient leaders; and 3) to create linkages between patient leaders and other key stakeholders around the world to leverage knowledge, experience and capacity.
As a member of GlobalSkin, the Cutaneous Lymphoma Foundation attended the RareDERM Forum to represent the cutaneous lymphoma community. CLF will continue to be involved in the working/advisory groups created to acheive the RareDERM three-year strategy.
Download the RareDERM Forum 2019 Outcomes Report to learn more.