RareDERM Community

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Delegates attending the RareDERM Forum, June 5-6th, 2019 in Milan


Global Community for People Living with Rare/Uncommon Dermatological Conditions

Who: Patient organizations serving people living with rare/uncommon dermatological diseases. These organizations provide essential services, support and access to information; opportunities to link with other patients; connection to researchers; and speak up for access to care and treatment. You are welcome to become involved with this special GlobalSkin community within our wider community.  

What: GlobalSkin is working with this unique community to significantly and measurably improve linkages for patient organization leaders; build capacity and coordination of a synchronized strategic approach to improve access to care; stimulate critical research; disseminate critical information; and improve treatment options for patients living with neglected rare or uncommon diseases.

 

To that end, we are:

  1. Establishing a RareDERM Diseases Working Group
  2. Building the wider global network by adding established patient organizations and broader communities to our network. Contact us via the form below, if your group isn’t already a member.
  3. Continuing the progress made at the RareDERM Forum ─ June 2019 in Milan, Italy
  4. Providing a central list of patient-initiated research to stimulate scientific research and support advocacy efforts to improve care and treatment.
     
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RareDERM Forum

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 organizations 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 outlined broad goals, defined challenges and needs; and began developing a strategy to build a cohesive community to grow knowledge and skills; to 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.

Since the Forum, GlobalSkin has been actively working on a variety of follow up activities including a summary document; the formation of advisory committees of patient organizations to complete next steps involving strategic planning; and set up of an online collaboration tool for the patient leaders. We will keep you posted as progress continues to be made.

Read the RareDERM Forum Outcomes Report.

GlobalSkin is grateful to its partner on this community building initiative: LEO Pharma.

 

Lichen Sclerosus Disease Experience Survey

Almost 1,500 participated in our lichen sclerosus survey during October!

See our Lichen Sclerosus Disease Experience Survey Results here.

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Please sign up to get involved in the RareDERM Community, RareDERM Working Group and/or to learn more!