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.
The GM1 & GM2 Tanganil Health Initiative was created in collaboration with the National Tay-Sachs and Allied Diseases Association (NTSAD) and the Cure Tay-Sachs Foundation (CTSF) to document patient experiences with off label use of Tanganil. Tanganil is a medication available without a prescription in Europe and indicated for the treatment of positional vertigo (dizziness). This Health Initiative was designed to better understand the benefits and risks experienced by patients taking Tanganil to
In honor of Hypoxic Ischemic Encephalopathy (HIE) Awareness Month, we are sharing some critical insights from our upcoming Community Voice Report produced in partnership with Hope for HIE. Earlier this month, community leaders and administrators of the Hope for HIE Support (Hypoxic Ischemic Encephalopathy) Parent Forum allowed TREND Community to analyze 7 years’ worth of real-world conversation data. From this wealth of evidence, our unique analytics engine and team of researchers have been able
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
As a mom of a daughter with a rare disease, Shwachman Diamond Syndrome, I wear or have worn many hats in this rare disease space. I am a mom, guardian, advocate, past president of the non-profit SDS Foundation with all that entailed, and now a member of a for-profit company, TREND Community, that helps individuals and caregivers with many different rare diseases bridge the gap between advocacy and industry. It really struck me while at the past Global Genes Patient Advocacy Summit just how many
As part of the GM1 & GM2 Tanganil Health Initiative, TREND analyzed the conversations shared in a private Facebook group created as an open forum for parents of GM1 and GM2 afflicted children to share their ideas, thoughts, concerns, and results of Tanganil. Following is our report. Prepared by Sarah Inoue, PhD This report is a first look at the information shared on the Facebook group: Tanganil for Tay-Sachs and Sandhoff created as an open forum for parents of GM1 and GM2 afflicted children t