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.

defining challenges and needs; building a cohesive community; growing knowledge and skills; stimulating research; fostering connectivity; delivering global advocacy

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.
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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.

Attending the Globalskin2019 Conference provided RareDERM patient leaders the opportunity to connect with leaders from organisations at various levels of maturity. Sharing experiences, best practices and being able to connect with other patient leaders provided immeasurable value to all who were in attendance.
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GlobalSkin’s Board President Jean-Marie Meurant explains, “I have personally found that while attending the conference – over meals and between sessions – the conversations that we have and the connections we make last long after the conference has concluded and are extremely valuable. Consider this…often someone else may have encountered a similar challenge that you now face and may share with you a solution that worked. Our diseases may be different, but by virtue of them involving the skin, our challenges are extremely similar. You are not alone in the work that you do.”

I have personally found that while attending the conference – over meals and between sessions – the conversations that we have and the connections we make last long after the conference has concluded
Jean-Marie Meurant GlobalSkin President

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.

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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
www.globalskin.org