It is early January, and if you are like most people, you probably have some things you want to accomplish in 2020. Resolutions are easy to make and difficult to follow through on, and many of the people dealing with rare disease might have different obstacles when it comes to achieving success.
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
How Doctors’ Language in Medical Records Impacts Patient Care….. and Rare Disease Drug Development Patient advocate, Casey Quinlan, posted an article a couple of weeks ago on LinkedIn and I can’t stop thinking about it. The author of the article, Emily Bradley, wrote a blog piece about the clinical language that is used by doctors in recording patient visits that can negatively affect the direction of a patient’s care and medical community in general. The article is poignant and insightful with
Growing up, we never celebrated Mother's Day because my mother's birthday was on or near the day and because, as a family, we felt an extra day was unnecessary. I have always had mixed feelings about the holiday. On the one hand, taking time to thank someone and express one's love is always a good idea, and some people do need a reminder to do so. On the other hand, the holiday can be so difficult for non-traditional families, people without mothers, people with abusive mothers, the list of prob