Capturing the Pitt-Hopkins Syndrome Community Voice

Picture of Maria Picone
Maria Picone

Last month, TREND Community partnered with the Pitt Hopkins Research Foundation to create a custom Community Voice Report for the “PARENTS of Pitt Hopkins” Facebook group. By analyzing years worth of real-world data, this report highlights the predominant disease burdens, management strategies, and urgent unmet needs for the PTHS community. Through their shared stories, questions, and discussions, the caregivers in this community have the capacity to inform and accelerate the discovery and delivery of better treatment methods.

This Community Voice Report marks the first step in understanding the research implications of these conversations. Through this partnership, TREND hopes to inspire future initiatives and improve the quality of life for caregivers and individuals living with Pitt-Hopkins syndrome.

Read the full CVR below:

TREND Community Voice – Pitt-Hopkins Syndrome – March, 2019 – V1.1

If you would like to learn more about what TREND can do for your community, please email us at or visit our website