Click here to watch the video. [https://vimeo.com/546236461] Rare Disease Week on Capitol Hill officially starts today, and an incredible group of people will come together to drive progress and share their experiences with decision makers in the Washington, DC. The TREND team loves attending Rare Disease Week on Capitol Hill. Since we can't be there in person this year, we created a video starring some of our friends who attended last year's event along with TREND co-founder and CEO, Maria P
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 fat, primarily globotriaosylceramide (GL3). This reduced activity leads to a buildup of GL3, which can cause cell dysfunction that can manifest in various ways, including pain and life-threatening complications such as progressive kidney damage and cardiovascular disease. TREND analyzed the Facebook group, “Fabry's Disease Info and Su
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 of young people with rare diseases. The purpose of this survey was to gather insights on how having a rare disease can both directly and indirectly impact the mental health of a young person. By gaining a better understanding we hope to be able to find better solutions and provide meaningful support. "Unlike the previous survey, pa
For those using alternative metabolic diets as weight-loss solutions, this isn’t the end of the world. For those using ketosis as a treatment for a neurological disorder, a slip up can be detrimental.
Our newest CVR is here [https://drive.google.com/file/d/16x6erGdbdY9NvxKIXfslD8TXYCqRoHy2/view]. Glucose Transporter Type1 Deficiency Syndrome (Glut1DS) a rare genetic condition that impairs brain metabolism. It is caused by a mutation in the SLC2A1 gene. More than 100 different types of mutations and deletions of this gene have been found to date in Glut1 Deficiency patients. The number of patients diagnosed is currently thought to number in the hundreds. Recent studies have estimated true p