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
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
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
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
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
6 Ways to Navigate Advocacy Burnout...As much as I want to be as open as I can for the community, I'm a firm believer that advocacy... By Jessica Hanson2 min readBookmark for laterReactions 0 reactions Comments0 comments
'It Takes a Village...' Building a Supportive Rare Disease Village...We want them to show up for us, to listen to us, and to offer us hope when we need... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
When Rare Disease Needs Don't Make Sense to Others...I can't just hop up at 4 PM to meet up with a friend if they call me needing help... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments2 comments
How Clinical Trials Are Transforming the Future for Rare Disease Warriors...My journey as a rare disease caregiver has taught me to value the significance of clinical trials in ways I never imagined.... By Elle Cole4 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
How I Gradually Changed My Relationship With Medical PTSD...I am not yet fully there in my healing, but I am progressing, and while the work is hard, I know... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Fighting for Rare Disease Medication Coverage...Even though this struggle is personal to me, I know that I am not alone.... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments1 comments
Community Views: What Makes Us Unique...It is so helpful to learn about so many different facets of this community.... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Getting Emotions Out: Why It Matters and How to Do It...Emotion suppression is something I frequently witness, and at times, I am guilty of doing it myself.... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Paving the Way for Change...The journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to, and joys... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
