TREND Community’s World Orphan Drug Congress Agenda

Jessica Massengale
Jessica Massengale
Community Ambassador, Scleroderma

PHILADELPHIA, May 17, 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 it will be participating at the World Orphan Drug Congress USA 2023 at the Gaylord National Resort & Convention Center, May 23-25, 2023, in Washington, DC.

Tuesday May 23 at 1:20pm EDT: Unlocking the power of data for patient advocacy – Leveraging lived experiences to empower the community and inform clinical development and commercialization. TREND Co-Founder and CEO Maria Picone will be leading this Patient Data Seminar, along with Cate McCanless, SVP, Chief Corporate Affairs Officer, Harmony Biosciences, LLC, and Kristina Davidson, Senior Director, Patient Advocacy, Horizon Therapeutics. 

Tuesday May 23 at 2:00pm EDT: Data Collection, Ownership and Use and Sharing with External Partners.  TREND Co-Founder and CTO Chris DeFelice will moderate an expert panel with community leaders from the International Fibrodysplasia Ossificans Progressiva Association, OpenTreatments Foundation, and MDA. 

Tuesday May 23 at 4:00pm EDT: Living with Autoimmune Diseases: Exploring the Shared Experiences of Sjögren’s, Arthritis, and Lupus Community Members. Dr. Al Freedman in partnership with Max Flurie, Senior Data Scientist at TREND, will moderate a panel comprised of community members, where data driven by social media conversations will be presented and discussed. 

Wednesday May 24 at 2:00pm EDT: Patient Engagement: Accessibility isn’t a checkbox, it is a form of patient empowerment. Rachelle Cook, Community Manager at TREND Community, will lead a Roundtable discussion. 

For additional information about 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