Happy Thanksgiving Patient Worthians! While you're still digesting, take a look at what we have in store for you this week. If you have EDS, we have some exercise tips…
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 minister, presidential candidate, powerful orator, and…
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 is an article honoring…
According to a new study, getting tested for Zika once is not enough. A second procedure may be needed to avoid giving birth to a child with defects. We all…
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 was indeed not right. Following that,…
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 advisors believe it can, according to…
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 promising new drug, for a disease…
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 story of of a…
Gatorade and other sports drink commercials often feature super athletes pushing themselves to the point of exhaustion, taking a swig from a sports drink, and then rallying to set new…
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 impacted by the disease in their…
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 for people living with scleroderma. The…
Did Wellmark Blue Cross and Blue Shield cross the line? Leading hemophilia groups, National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) believe that they…
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 a 10-year-old girl with cerebral…
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 had their daughter Cassidy on…
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, but also on those who care…
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 several painful days to finally…
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 miss. One of our contributors…
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 progressive loss of body fat. At…
Getting a cold or flu is bad enough for most "healthy" people, but if you have a progressive, incurable lung disease, such as idiopathic pulmonary fibrosis (IPF), cystic fibrosis, COPD,…
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 anchor is passionately reminding me…
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,- The Vancouver and Atlantic Acromegaly support…
Si usted o alguien que usted conoce tiene síndrome de Ehlers-Danlos (EDS), usted probablemente sabe mucho sobre él, que te hace parte de un grupo muy pequeño. No mucha gente…
According to a press release put out by PTC Therapeutics, Inc., the Office of Drug Evaluation of the Food and Drug Administration on Wednesday, Oct. 25th, 2017, sent a complete…
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 also have a story…
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 develop invasive breast cancer, according…
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