Patient groups often set up social media groups to provide support and share experiences of their diseases. In this webinar we will explore how conversations in such forums can be a rich resource of real-world data that can help better understand disease burden and provide new insights to facilitate the development of treatments for rare diseases.

During the 60-minute session our speakers from industry and patient groups will discuss the following topics:

• What is social listening and how can it benefit rare disease communities?
• Examples of new insights into rare disease derived from social listening
• Translation of real-world data from social listening to develop clinical trials and therapies
• Balancing a safe space for patient communities with maximising insights from data
• Tips on setting up patient group conversations to help technology extract real-world data

Expert speakers include:

• Dr Terry Jo Bichell, Founder and Executive Director at COMBINEDBrain
• Maria Picone, Co-Founder and CEO at TREND Community
• Trish Flanagan, President at The Yellow Brick Road Project

You can watch the webinar recording below. We did our best to answer as many questions during the session, but if you have any additional ones for us please take a look at our FAQs section or submit them via email to accelerate@healx.ai

Webinar | Social Listening: Utilising Real-World Data From Patient Communities to Accelerate Treatment Development from Healx on Vimeo.

About our speakers

Dr Terry Jo Bichell | Founder and Executive Director at COMBINEDBrain

Terry Jo Bichell worked as a documentary filmmaker in the early days of videotape, then became a public health nurse-midwife after filming a difficult birth in West Africa. When her youngest child, Lou, was diagnosed with Angelman syndrome, she switched from midwifery to clinical research. Finally, she went back to school to earn a PhD in neuroscience from Vanderbilt University in an effort to find treatments for her son.

Dr Bichell was Founding Director of the Angelman Biomarkers and Outcome Measures Alliance (A-BOM) until 2018 and is now the Founder / Director of COMBINEDBrain.org, a non-profit consortium which assists other rare genetic neurodevelopmental disorders in clinical trial readiness.

Maria Picone | Co-Founder and CEO at TREND Community

Maria Picone is the Co-Founder of a digital health analytics company that she started together with her husband, Chris, after their child was born with a rare disease called Prader-Willi syndrome. The mission of TREND is to inspire solutions that accelerate treatment discovery and improve the quality of life for people living with rare and underserved diseases. They’ve developed analytics technology that analyses social media conversations to understand diseases from patient and caregiver perspectives.

Trish Flanagan | President at The Yellow Brick Road Project

Trish is a passionate co-founding member of the Board of the Directors for The Yellow Brick Road Project and mum to Morgan, touched by an HNRNPH2 mutation. A seasoned early childhood educator, she earned her Bachelor’s Degree of Science from Penn State University majoring in Human Development and Family Studies with an Early Childhood focus. She went on to earn her Master’s Degree in Early Childhood Education from the College of New Rochelle and resides and teaches in the suburbs of New York.