TREND Community’s Report on Identifying Mental Health Challenges Experienced by Caregivers in Rare Disease Communities: A Social Media Analysis

Jessica Massengale
Jessica Massengale
Community Ambassador, Scleroderma

PHILADELPHIA, February 27, 2023 – TREND Community, a digital health analytics company that turns the conversations of rare, chronic, and emerging disease communities into actionable insights today announced that its poster, titled “Identifying Mental Health Challenges Experienced by Caregivers in Rare Disease Communities: A Social Media Analysis,” will be presented at NIH 2023 Rare Disease Day, February 28, 2023, NIH Main Campus (Natcher Conference Center) in Bethesda, Maryland.

The poster is based on a study that leveraged TREND’s analysis of over 2 million posts/comments over more than 14 years across 10 private Facebook groups comprised of rare disease caregivers.

TREND’s proprietary analytics engine, which incorporates artificial intelligence (AI) for natural language processing (NLP), sought to understand the unique challenges associated with rare disease caregivers and actively listen to and interpret their experiences. The analysis found that across the communities evaluated in this study, the average number of posts/comments has doubled over 10 years. Shared topics across communities included conversations about specific mental health symptoms (e.g., guilt, ptsd, anxiety, stress) as well various milestones (e.g., walking, language, growth), management approaches (e.g., therapy dogs, thc/cbd), and other events (e.g., seizure activity, education/IEPs).

To view the poster, click here.

The authors are Christopher DeFelice, Maria Picone, Thomas V. D’Amato, Monica Converse, Trina Clayeux, Rachelle Cook, Kristina Davidson, Jess Grove, Matthew Horsnell, Erin McNair, Michael Salazar, Andrea M. Atherton, Andrew Wright, E. Robert Wassman, Wei Li, and Maurice Flurie.

This work was funded by Horizon Therapeutics and supported by Give An Hour.

For additional information about this poster or collaboration and partnerships with TREND, please contact: Maria Picone at

About TREND Community

TREND Community turns the conversations of people who have rare, chronic, and emerging diseases and their caregivers/care partners into actionable insights through our proprietary evidence-accelerator approach. Above all, we prioritize the privacy and trust of every community member. For more information visit

About Horizon

Horizon is a global biotechnology company focused on the discovery, development and commercialization of medicines that address critical needs for people impacted by rare, autoimmune and severe inflammatory diseases. Our pipeline is purposeful: We apply scientific expertise and courage to bring clinically meaningful therapies to patients. We believe science and compassion must work together to transform lives. For more information on how we go to incredible lengths to impact lives, visit