In February 2020, TREND presented a poster at NIH Day during Rare Disease Week on Capitol Hill titled: Insights From Closed Social Networks Advance the Understanding of Commonalities Between Rare Diseases [https://drive.google.com/file/d/1dga0XRjfUc1eGWEV6MT33Y3VfacHsPeA/view]. This poster summarized conversation data from twelve rare disease communities (chromosome 8p disorders, chronic urticaria, congenital rubella syndrome, cutis marmorata telangiectatica congenita, epidermolysis bullosa, GM1...
In April 2019, FDA held a public meeting to obtain patient and caregiver perspectives on the common issues and symptoms between rare diseases with the goal of synergizing and advancing medical product development. To support this effort, TREND Community is launching a series of initiatives to understand the commonalities and differences between rare diseases by analyzing years’ worth of real-world social data. For our first data exploration, we analyzed two private Facebook groups to identify t...
TREND Community aspires to create a social media platform focused on the needs of rare and chronic disease communities. These communities use social media to improve their lives, support each other, and advocate for each other. The conversations that come out of these communities can be analyzed to provide researchers and companies new insights that allow all of us to find new ways of treating their disease or lessening its impact. We welcome an ongoing dialogue with you all. We will strive to p...
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