What to Know About Newborn Screening and Rare Diseases...If left untreated, SMA causes muscle weakness and eventually death. The FDA approved gene therapy for SMA in 2018.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
What Is an Orphan Drug?...From 2006 to 2015, over 270 orphan drugs were approved. That may sound like a small number.... By Editorial Team 3 min readBookmark for later
Gene Therapy for Hemophilia...(FDA) to treat people with hemophilia.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Some of My Most Absurd Rare Disease Mishaps...With hemophilia, you learn something new all the time.... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
My Rare Disease Journey With Hemophilia...I'm at a great place with hemophilia now.... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
What If I Hadn't Been Born With a Rare Disease?...If I didn't have hemophilia, would there have been a bright future in baseball for me?... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Bowled Over Again (in a Good Way!): Being Proactive With My Health Goals...My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned.... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
What Is a Rare Disease?...Some have been known for hundreds of years, like cystic fibrosis and hemophilia. Others have only recently been discovered.... By Editorial Team 3 min readBookmark for later
Don’t Pass on the Pass: An Accessibility Fail...The most consistently bothersome aspect of living with hemophilia is my left ankle.... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
My Multidisciplinary Care Team: Why I Love My Hemophilia Treatment Center...treat hemophilia in the 1980s.... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
Surprise! It's Rare Disease Day!...Heck, I don't even know all of the intricacies of hemophilia myself.... By Shawn Decker2 min readBookmark for laterReactions 0 reactions Comments0 comments
Getting Beyond the BS (Beyond Severe)...If someone has attached horror movie theatrics to hemophilia as a way of remembering that it is a bleeding disorder, I can’t really fault them for doing... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Groin Wiser: Adopting New Strategies to Manage My Rare Disease...strategies, including a more prophylactic approach to hemophilia.... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Community Health Leaders...Pompe, it's in my DNA, I was diagnosed with the Rare Inherited Genetic Muscle Weakness Disease when I was 50 yrs old in Nov, 2018.... By Editorial Team 4 min readBookmark for later
How Is Hemophilia Treated?...Hemophilia is a bleeding disorder that prevents the blood from clotting properly.... By Editorial Team 5 min readBookmark for later
Community Spotlight: Bleeding Disorders That Aren't Hemophilia...Symptoms of Von Willebrand are similar to hemophilia and include: Like inherited hemophilia, acquired hemophilia (AH) is a bleeding disorder.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Groin Older: Aging With Hemophilia...As a child born in the mid-70s with hemophilia, I was part of a unique generation.... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments4 comments
The Lingering Threat of Self-Stigma...I strongly believe that my ability to live a healthy life with hemophilia A partly depends on my attitude.... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
How I Get Through Tough Days...That occurred about a decade ago, around the same time that I was being more proactive about hemophilia.... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Am I Too Chill About My Rare Disease?...I feel like there will be a cure for hemophilia in my lifetime.... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
