Tags Posts tagged with "news"

news

Reverend Jesse Jackson has been a guiding force in Civil Rights activism for over 50 years. He's a man of many facets: a baptist...

Happy Friday Before Thanksgiving! As you prep your tummies for the feast next week, take a dive into some of our top stories this week. There...

According to a new study, getting tested for Zika once is not enough. A second procedure may be needed to avoid giving birth to...

When Anthony Byrd's son, Xavier, was born, something didn't feel right. A closer look at Xaier's face using a heat lamp revealed that something...

Can increasing awareness and early screenings have an impact on heart health in Canada? When it comes to familial hypercholesterolemia (FH), Vancouver’s top medical...

We're in a tumultuous time for Duchenne muscular dystrophy (DMD) treatment. Recently, the DMD community was outraged when the FDA rejected ataluren (Translarna), a...

Happy Friday! We have an FDA approval this week for rare cancer patients! We also have the details on a hypophosphatasia fundraiser. There's also an inspiring...

Gatorade and other sports drink commercials often feature super athletes pushing themselves to the point of exhaustion, taking a swig from a sports drink,...

The FDA makes decisions that determine the lives and treatments of patients with rare diseases. Many of these people who make these decisions aren't...

In an article by Wendy Henderson on sclerodermanews.com, joint stiffness, arthritis, joint contractures, tendon pain, and nerve pain are the most common causes of pain...

Did Wellmark Blue Cross and Blue Shield cross the line? Leading hemophilia groups, National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia...

Lawyers in Texas were enraged. They demanded the government give a 10-year-old girl with a rare disease back to her family. Rosa Maria Hernandez is...

We've heard a lot about the biology behind Zika's causes of microcephaly but haven't heard a lot about the patients themselves. Keegan and Corey Kistenmacher...

There are an estimated 7,000 rare diseases and each one takes its toll. The effects aren't just felt by the person with the condition,...

Pauline Siegel was 35-years-old when she was unexpectedly struck with a rare disease that would render her disabled from the waist down. The diagnosis took...

Happy Friday! We have some great news for the short bowel syndrome community. We also have info on a PBS doc you won't want to...

Familial partial lipodystrophy (FPL) is a rare genetic disorder that causes fat cells to die off. This makes people with this disorder suffer from the...

Getting a cold or flu is bad enough for most "healthy" people, but if you have a progressive, incurable lung disease, such as idiopathic...

I always schedule my mammograms during October, as it’s Breast Cancer Awareness Month. It’s much easier to remember to get one when every network news...

It is Patient Worthy’s pleasure to report on the first International Acromegaly conference which brought together acromegaly support groups from East and West Canada,-...

According to a press release put out by PTC Therapeutics, Inc., the Office of Drug Evaluation of the Food and Drug Administration on Wednesday,...

Happy Pre-Halloween Patient Worthians! October is Dwarfism Awareness Month. Not only that, MDS World Awareness Day was just two days ago! Get the deets below. We...

Breast cancer, BRCA1, and BRCA2 are very much in the news these days. While the BRCA mutation is rare, 1 in 8 U.S. women will...

All a Hollywood star needs to do is be seen with a designer outfit, bag, or shoes and that company can be propelled from...

What happens when you’re not the cancer that everyone is talking about? Funding, research, and headlines can often be noticeably lacking when you’re just...