Dear UK businesses and decision makers within them, I know it’s mental health awareness week but for my benefit could you for just a couple of minutes focus on the…
An ongoing study is investigating how water intake could help treat autosomal dominant polycystic kidney disease, says a recent report. Autosomal dominant polycystic kidney disease (ADPKD) is the most common…
In data presented earlier this month in San Diego at the 2017 American College of Rheumatology Annual Meeting, researchers noted that female patients with psoriatic arthritis had significantly higher rates of…
May 12th through May 16th is National Neuropathy Awareness Week! It is reported that about 1 in 15 Americans are afflicted by neuropathy - but many of them do not…
Patients with juvenile idiopathic arthritis (JIA) who used a program to receive health education and help in taking the lead in their own disease management is winning praises for its…
In a press release, CURE Media Group announced the development of a 13-part series on carcinoid syndrome. A series of discussions involving both doctors and patients educating patients, caregivers and…
Imogen Fare, at age six, wrote a letter and became her own advocate. Both she and her two-year-old sister, Anabella, suffer from cystic fibrosis. That’s why the young girl wrote…
According to a story from Neuroscience News, the case of a woman with neck dystonia who was using a deep brain stimulation device called an implantable pulse generator (IPG) indicates…
According to a story from eurekalert.org, a recently study has helped reveal some of the genes that are associated with hemiplegic migraine headaches. About 15-20 percent of adults in the…
According to a new study, pregnant women with high levels of cortisol and high blood pressure may have Cushing's disease. Although Cushing's is rare during a woman's pregnancy, the conclusion…
A phase 3 Murano clinical trial has shown that combining the drugs Venclexta (venetoclax) and Rituxan (rituximab) could be an effective treatment for chronic lymphocytic leukaemia, reports Cancer Updates, Research,…
A recent study published online at JAMA Neurology, provides evidence that exercise is not only safe for Parkinson's disease, but may also hold the key to stopping the advancement of…
Patient Worthy recently attended ALD Life’s Community Weekend 2018, which brought together people and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN), and scientists, researchers, and doctors. One of the speakers…
We all have those well intentioned colleagues, friends, and family members. You try to explain to them what primary biliary cholangitis (PBC) is, what’s going on in your body, and what…
The U.S. Food and Drug Administration (FDA) has just approved a drug called Darzalex (daratumumab) in combination with the drug Velcade (bortezomib), melphalan, and prednisone (known collectively as VMP) for…
According to a story from eurekalert.org, the first patient that received treatment with alipogene tiparovovec reported positive results after an eighteen month treatment period. Alipogene tiparovovec is a gene therapy…
According to a story from Ankylosing Spondylitis News, treatment of chronic pain is always a difficult task for health care professionals. Patients with ankylosing spondylitis (AS) are especially prone to…
According to a story from the Leamington Observer, four-year-old George Young's first words were 'mama' and 'papa,' but he did not know how to say them for very long. George's…
A popular book by Dr. Seuss that is often given to graduates is Oh the Places You'll Go. Now, suppose Dr. Seuss had entered the rare disease world. Perhaps he…
When I was pregnant with my second child, I knew it would be different. We had all the essentials from having my daughter a few years earlier, and advice from…
Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind. I remember thinking to myself, “She…
According to a story from the Westside Gazette, it is essential for young men to be aware of the risk of testicular cancer and to know when it might be…
According to a story from The Tennessean, mother Melissa Hogan has been inspired by her son Case's Hunter syndrome to start a nonprofit organization called Project Alive. The primary purpose…
Happy Pre-Mother's Day Everybody! This week we're spotlighting four articles from or about members of the rare community. We have a tribute to nurses from a rare mom recognizing their…
According to a story from Sickle Cell Anemia News, the St. Jude Children's Research Hospital just received $1 million in grant funding from The Links Foundation, which is one of…
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