TREND is excited to announce the fact that biopharmaceutical company, Kiniksa, has received Breakthrough Therapy designation for rilonacept for the treatment of recurrent pericarditis....
TREND's newest CVR is now available. ...
Overview October 24, 2019 - TREND Community announces its newest Health Initiative, done in partnership with The Chion Foundation, and aimed at understanding how narcoleptic symptoms (including cataplexy) affect individuals with Prader-Willi Syndrome (PWS). This Health Initiative builds upon our August 2018 PWS Community Voice Report, in which we published that members of the PWS community frequently discuss issues related to sleep. TREND Community pursued this observation in partnership with ...
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...
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...
Our newest Community Voice Report involved some inspiring patients and caregivers, and we are pleased to share our CVR on Prader-Willi Syndrome. We'd like to extend our thanks to everyone who participated. ...
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