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.
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
Come tell your story on TREND Community and join our #RareStory campaign for #RareDiseaseDay! Using the TREND Community My Story tool, tell us about your rare disease journey including photos of you and your loved ones. Then print it or share it with the world on social media on #RareDiseaseDay To get started, request an invitation on our website: trend.community [https://trend.community] (scroll to the bottom of the page). For questions, please email email@example.com
The Congenital Rubella Syndrome (CRS) Community has partnered with TREND Community to find answers for CRS survivors. This underserved group hopes that an analysis of years of discussions shared through Facebook and email, along with patient & caregiver contributed stories, will provide them with clear data to inform: the healthcare system to better recognize, research, and alleviate the symptoms of this disease; government to gain recognition of the disease as a disability and lifelong problem;
The Chion Foundation, an organization committed to improving the lives of individuals affected by Prader-Willi Syndrome (PWS) and other rare diseases, has partnered with Trend Community, an innovative patient experience and engagement platform, to launch the Pitolisant Health Initiative to explore the potential of pitolisant (sold under the brand name of Wakix™) to address the many unmet needs of patients with PWS. PWS is a rare, complex disease characterized by hunger, disturbances in the sleep