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,…
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…
All a Hollywood star needs to do is be seen with a designer outfit, bag, or shoes and that company can be propelled from anonymity into the white, hot spotlight.…
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 a run-of-the-mill, life-threatening gene mutation, according…
Spinal muscular atrophy (SMA) is the leading genetic cause of infant mortality in the USA. So why aren't hospitals in Texas screening newborns for it? That's what a group of…
A California judge threw out a $417 million verdict against Johnson & Johnson in a lawsuit by Eva Echeverria - who claimed she developed ovarian cancer after using Johnson &…
GW Pharmaceuticals is a British biopharmaceutical company known for its treatment in multiple sclerosis. They are also known as one of the pioneers in the cannabis industry. Since they were…
Sean Dixon had his dreams of becoming a cop come true when the Suffolk County Police Headquarters made him a detective for the day, but after two years of battling…
Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…
After the long hard fight against Sturge-Weber syndrome, 23-year-old Craig Morrison could fight no longer. He passed last Monday following complications with his rare disease. Sturge-Weber syndrome springs at birth…
Prescription drugs have always been overly expensive but there's now hope for these prices to drop down. On Tuesday morning, the Senate Health Committee held a hearing to discuss the…
According to a late-summer press release sent out by the companies, two pharma players are joining forces and making waves in gene therapy for hemophilia A. Sangamo and Pfizer announce…
How far would you go to eradicate a disease that impacts millions of lives? Would you cross the ethical line if it meant ending a source of suffering forever? Or…
Happy Friday Patient Worthians! This week, we have an awesome story about PW Partner Avery's Angels. We also have a PW Contribution about key lessons everyone can learn from the…
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