Reading between the lines…TREND Community Voice Report World Narcolepsy Day 2021 was a day to celebrate. Hundreds of people with narcolepsy and their support members
Narcolepsy is a rare disease that affects 3 million people worldwide. People living with narcolepsy can experience significant disruptions in their daily routines that make
TREND Community believes that valuable and actionable insights can be gained from the community perspectives and life experiences shared throughout social media, especially when traditional
Fabry disease is a rare genetic disorder caused by decreased activity of a lysosomal enzyme called alpha-galactosidase A, the enzyme that metabolizes a type of
TREND Community, RARE Revolution Magazine and RARE Youth Revolution are excited to release findings from our second Rare Youth Survey, all about the mental health
Our newest CVR is here. Glucose Transporter Type1 Deficiency Syndrome (Glut1DS) a rare genetic condition that impairs brain metabolism. It is caused by a mutation
Behind many rare disease patients are caregivers who lend support. Some people are lucky enough to have a wide support system, with friends, family, and
Our newest CVR is here. We would like to thank the SLC6A1 Family Support Group for providing access to the data used to create this
Our newest Community Voice Report (CVR) is here. We thank the Chronic Urticaria Support Group for providing access to the data used to create this
Our newest Community Voice Report (CVR) is here. We thank CPVT Kids & Families Sudden Death Arrhythmia for providing access to the data used to
