RareDERM

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Global Community for People Living with Rare/Uncommon/Neglected Dermatological Conditions

Who: Patient organizations serving people living with rare/uncommon and neglected 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 [link] if your group isn’t already a member.
  3. Hosting a RareDERM Forum ─ June 2019 in Milan, Italy in advance of the Globalskin 2019 Conference (some funding for travel available).
  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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My organization wants to be be part of the RareDERM Working group

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Lichen Sclerosus

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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.