RareDERM Community

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.

On June 1, 2023, the RareDERM Forum took place in Brussels with participation from 40 members representing 26 countries. The forum began with presentations from three experts on the opportunities and challenges in RareDERM from a policy, research and industry perspective. The facilitator, Kathy Redmond, from Redmond Consulting, then led a panel discussion with the three experts Tricha Schivas, Foundation For Sarcoidosis Research, Ioannis Sapountzis, Boehringer Ingelheim, and Dolores Cviticanin, Rare Disease International setting the stage for the various strategic planning activities later in the day.

A highlight of this gathering, and key to the strategic conversations, was the World Café. Members moved from table to table engaging in thought provoking conversations on topics pertinent to the RareDERM Community.

As a result of all the facilitated discussions throughout the day, strategic objectives and core activities were identified and a new vision and mission emerged. GlobalSkin is proud to share the newly co-created RareDERM Value Proposition with the Community Members. 

GlobalSkin is excited to take part in Rare Disease Day 2024 on February 29, by highlighting and raising awareness for rare dermatological diseases. 

We have created new resources to assist with Members’ online presence on Rare Disease Day.
 

Click here to learn more about the fund and download materials!

Thank you to everyone who attended our webinar, "A New Approach to Rare Skin Disease Drug Discovery", on October 18, 2023. Development of treatments in dermatology is rarely considered a high priority by medical professionals and researchers, particularly rare skin diseases. Patient organizations looking to increase research and find treatments for rare skin diseases face the challenges of scale, scarce data, political issues, and declines in orphan drug designations in the world of rare skin diseases.

We would like to extend our appreciation to the presenters from Rarebase PBC, Joyce Teng, MD, PhD, Professor of Dermatology & Pediatrics at Stanford University and Christopher Moxham, PhD, CEO & Chief Scientific Officer at Rarebase PBC. Watch the full webinar recording below.

On December 16, 2021 the UN Resolution on Persons Living with a Rare Disease and their Families in 2021 (led by RDI, EURORDIS, and the NGO Committee for Rare Diseases) was formally adopted by the United Nations General Assembly! 

Over half of GlobalSkin's Members represent patients living with rare dermatological diseases. We are very proud to have been part of the campaign and look forward to continuing to raise awareness about the burden of rare skin conditions with policymakers.
  
Learn more about the UN Resolution on Persons Living with a Rare Disease - Rare Diseases International. 

Susan Thornton - Cutaneous Lymphoma Foundation, USA

Tricha Shivas - Foundation for Sarcoidosis Research, USA

Laurence Gallu - PEM Friends, France

Marjolein van Kessel - Naevus Global, Netherlands

Annemarie Sluijmers - Lupus Europe, Netherlands

Lex van der Heijden - CMTC, Netherlands

Gaylord Inena Wa Inena - Corbetta RDC (Democratic Republic of Congo)