When There’s a Shortage of the Medicine That Keeps You Alive...In the summer of 2021, once again, there was a shortage for a few months.... By Annie-Danielle Grenier4 min readBookmark for laterReactions 0 reactions Comments0 comments
Community Views: The Biggest Misconception About My Rare Disease...“Women can’t have hemophilia. We hear it all the time.” “It’s all in your head. Nothing is wrong with you.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Myths and Misconceptions About Rare Diseases...Cystic fibrosis, hemophilia, and Gaucher disease are examples of genetic rare diseases that may be diagnosed in children.... By Editorial Team 3 min readBookmark for later
What Is Power Posing?...needed to understand if power posing actually has long-term benefits and whether it can help alleviate the symptoms of chronic, rare conditions like hemophilia... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Reflecting on My 20th Anniversary With My Rare Disease...My life was upended because of a viral infection 20 years ago.... By Annie-Danielle Grenier4 min readBookmark for laterReactions 0 reactions Comments0 comments
What Is Gene Therapy?...Gene editing is a way for scientists to change a cell's DNA. Scientists use advanced tools to cut DNA at specific spots.... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Try Walking in My Brace...I had such a wonderful time on vacation with no hemophilia-related issues whatsoever...if only!... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...Since I have moderate hemophilia, I treat "a la carte."... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
Working Remotely as a Caregiver...small house chores, exercising, or reading a book.... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
Alex Gaudlap...Being a young mom of a rare boy has been one of the most challenging jobs Alex has ever and will ever have.... By Editorial Team 2 min readBookmark for later
"What's Up, Doc?" What the Doctor-Patient Relationship Means to Me...Having been born with hemophilia A, I've been really fortunate with my hematologists.... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
The 2024 Social Health Awards Program...We are very excited to announce the launch of the 2024 Social Health Awards program!... By Editorial Team 1 min readBookmark for laterReactions 0 reactions Comments0 comments
How Is Fabry Disease Treated?...The GLA gene controls the alpha-galactosidase A (alpha-Gal A) enzyme.... By Editorial Team 3 min readBookmark for later
Shawn Decker...His humorous memoir, My Pet Virus, which details his experiences growing up with hemophilia and HIV, was published by The Penguin Group and, recently,... By Editorial Team 1 min readBookmark for later
Clinical Trial Glossary...Phase 1: A stage in which a small group of volunteers takes a drug or tests a new device.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Xanadu I or Don't I? A Rare Disease Roller Skating Odyssey...Having moderate hemophilia doesn't prevent me from doing most of what I want to. I could have said, "Yes!"... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Common Tests and Tools for Diagnosing a Rare Disease...The lab checks it for genetic mutations that can cause inherited diseases or defects, such as hemophilia. Amniocentesis is not routinely done.... By Editorial Team 4 min readBookmark for later
