Editor’s Choice: Celebrating Life, Talking Rare Disease Stigmas
Happy Labor Day Weekend! It is our hope that all of our readers are safe and sound with family this weekend. Given the tragic hurricane flooding in Texas (and India)…
Happy Labor Day Weekend! It is our hope that all of our readers are safe and sound with family this weekend. Given the tragic hurricane flooding in Texas (and India)…
Researchers at The Ohio State University Wexner Medical Center are curious about how nicotine may effect patients battling sarcoidosis. Sarcoidosis effects everyone differently. It occurs from excess granulomas, often resulting in…
Tammy Grover is a mama bear in every sense of the word. She keeps her cubs close and has dedicated her life to trying to help them survive. Two of…
Time is running out to register for #PHAontheRoad in Pittsburgh on Saturday, Sept. 9th at the Hyatt Regency Pittsburgh International Airport hotel. This is the @PulmonaryHypertensionAssociation’s last “on the road”…
Before I tell a story (that I first read in The Globe and Mail newspaper) about Joaquin Farias and his years-long quest to unlock the mysteries of dystonia, I must…
When it was “that time of the month” nearly everyone around me knew it. My parents knew that my snarky responses had less to do with my attitude and more…
A team of researchers at the University College of London (UCL) looking at the genome of childhood-onset dystonia patients has stumbled on a startling discovery: 28 of the patients had…
I remember when the local news reporters interviewed my parents as a child. They asked the caretakers many of the questions at the time. People want to hear the story…