If you look on Ed Sheeran's Instagram you will see a recent photo of him and a beautiful eleven-year-old fan. But this is not just any fan-- the picture holds…
Duncan Avery is father to two children, Kalea, and Noah. At age six, doctors discovered Kalea had a tumor in her brain. They would successfully remove it via surgical methods.…
Most of us are familiar with Parkinson's Disease. Parkinson’s disease is a central nervous system disorder affecting movement. It is a progressive disease and develops gradually, sometimes starting with a subtle tremor in…
Who needs a shot of feel good today?! Young Skye Savren-McCormick was diagnosed with juvenile myelomonocytic leukemia in 2016 and required a bone marrow transplant - and Hayden Hatfield Ryals…
Helena Baker is the Vice President of Clinical Strategy at Medical Research Network, a Nurse, and also, a rare disease patient. I had the opportunity to interview her for a…
According to a story from medicalxpress.com, early tests of a gene therapy for X-linked myotubular myopathy are showing promising results. This could represent a major breakthrough for this disease, which…
Cleveland Clinic’s first every three-way kidney transplant has taken place. It involved six people in total: three donors and three recipients. The full article can be read here, at the…
When you think of arthritis, naturally the first thing that comes to mind is an older person - and with good reason, since artists is more common in people over…
For any John Oliver fans out there, you know his thing is deep-diving into topics of importance - from beauty pageants to international elections to failing American infrastructure - just…
Happy Independence Day Weekend! As the firework shows wind down, we want to wrap up the week with three great contributor stories, and one research update. First, we have some…
Dewayne Johnson used to work as a school groundskeeper. Now, some days, he can’t manage to speak as a result of the cancer he lives with. Now, despite professional expectations…
July 13th is Gastrointestinal Stromal Tumors Awareness Day! And that "13" has extra relevance. 5,000 Americans are diagnosed with Gastrointestinal Stromal Tumors (GIST) each year. That’s 13 people diagnosed each day.…
A recent genetic study of early settlers in Iceland is hoped to shed light on certain genetic diseases, as well as the history of the population. The original articles can…
A new treatment for schizophrenia has been approved by the US Food and Drug Administration (FDA). Aristada Initio (aripiprazole lauroxil) for the initiation of Aristada (aripiprazole lauroxil) is now expected…
Researchers have found that taking nutritional supplements may affect the progression of genetically caused hearing loss. The full article can be read here, at Michigan Health Lab. Background to the…
According to Queenstown Research Week, AWCBR, and QMB will be hosting a satellite event in August. The event will center on rare brain diseases, bringing together a group of dedicated…
According to a story from Check Orphan, a group of scientists from Stanford have begun the process of developing a new test that could help patients with rare Fanconi anemia…
According to a story from reuters.com, the U.S.-Israeli company BrainStorm Therapeutics will not provide its investigational stem cell treatment under the recently passed U.S. Right to Try law. The company…
The Australian government will give $33 million to researchers to study rare cancers and rare diseases. The original article can be read here, at the Department of Health’s website. Background…
Happy end-of-June, readers! A lot of people are getting ready for the fourth of July right now. However, as a lot of the rare community knows, not everyone is able…
June is Apert Syndrome Awareness Month! As summer sets in, let's take a moment to learn a little more about this rare disease and do our part to raise some…
According to a story from bioengineer.org, a group of scientists working at the Columbia University Irving Medical Center (CUIMC) have managed to develop a computational model that could potentially make highly…
Jim and Melea Martin are Outreach Partners with Future by Design, a family support group organized by the Cystinosis Research Network. Melea has cystinosis and Jim is her husband. We…
This article discusses the plot of the biographical film Brain on Fire. Susannah Cahalan was twenty-four when she began experiencing seizures, hallucinations, and, after only a few weeks, catatonia. Her…
Tomorrow is World Scleroderma Day! This date is an opportunity for anybody with an interest in scleroderma to join together as one united voice to shine a spotlight on a…
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