GlobalSkin has been actively working this year to establish a community of patient organizations for atopic eczema patients worldwide. Projects have included the launch of AltogetherEczema.org, World Atopic Eczema Day and release of a co-sponsored report on atopic dermatitis with the Economist Intelligence Unit. The lessons we are learning from this community building will be very helpful as we begin to build more disease- and region-specific communities.
GlobalSkin has created an online platform for the Atopic Eczema community (AltogetherEczema.org), where patients with eczema and atopic dermatitis, caregivers and patient leaders can connect and find resources pertaining to their disease. The platform encourages visitors to take a short survey which aims to find out what it is really like to live with atopic eczema. The data will be used to help spark an international conversation on living with this skin disease and help to connect people who are suffering. Visitors can hear and share stories and discuss ways in which living with eczema and atopic dermatitis can be improved. A patient organization directory is also available that can provide patients with further support in their region. Visitors have already completed over 4,200 sessions on the site.
What is it really like living with atopic eczema? On September 14, 2018, IADPO brought voice to patients and their caregivers by asking them that question in an online questionnaire on our new interactive online community AltogetherEczema. Working with patient associations around the world, IAPDO helped to help spark an international conversation focused on issues related to living with this disease ─ all with a view to bringing about positive change.
For a summary of Twitter discussions that took place that day, click here.
The release of this publication was marked by a live webinar which featured a panel discussion that included our CEO Christine Janus. Read the news release and link to the report and watch the recorded webinar here.
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