According to a story from cafepharma.com, Akcea Therapeutics, Inc. recently announced that the FDA's Division of Metabolism and Endocrinology Products Advisory Committee voted to recommend approval of the therapy Waylivra…
Whenever a rare disease family is in crisis, which happens all too frequently, the request for prayers goes out to others, knowing that the response will bring about comfort. Rare…
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…
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…
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…
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…
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…
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…
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…
According to a story from Newshub, Freda Evans learned early on that there were no treatments covered under the New Zealand health care system to treat her Pompe disease. Freda…
The hashtag #hotpersoninawheelchair went viral after the Youtuber and activist Annie Segarra used it as a response to an offensive tweet by Ken Jennings, reports The Guardian. Jennings, best known…
According to a story from Newswise, almost 500 infants that were born with congenital hyperinsulinism were treated with surgery that involved the removal of either part of or the entirety…
According to a story from the National Hemophilia Foundation, a collaborative team of researchers from the U.S. and Sweden recently announced the results of a study the indicated that a…
According to a story from Newswise, the Seaver Autism Center for Research and Treatment at Mount Sinai recently announced that patient enrollment has begun for a clinical trial that will…
According to a story from The Jerusalem Post, the medical research of professor Marcelle Machluf has been a subject of controversy from the beginning. Her research led to the nano…
I have always had a gusto for life. Big dreams. Grand ideas. Strong and independent with a will to fight for what I want. And while I’ve had my share…
My name is Stephanie. I am Tristan's older sister and a Registered Nurse. I spend a lot of time with him as he requires nursing care around the clock. I…
Getting dressed is one of the first things we do every day. And besides keeping up with fashion, or making sure an outfit is coordinated, most of us probably don’t…
26-year-old Ilka Brühl of Germany was born with ectodermal dysplasia, a group of genetic disorders that involve a facial cleft and overgrown airways, defects of the hair, nails, teeth, skin and…
A website called CrowdMed is changing the way patients can be diagnosed. It uses a group of people to collectively analyse challenging medical cases through ‘crowd wisdom.’ A TedMed talk…
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