At the 2018 Aplastic Anemia and MDS International Foundation’s (AAMDSIF) International Bone Marrow Failure Disease Scientific Symposium of March 2018, Dr. David Margolis from the Medical College of Wisconsin, and…
According to a source article on Business Wire that can be found here, the Committee for Orphan Medicinal Products (part of the European Medicines Agency) has recommended that the experimental…
According to a story from Market Screener, the biopharmaceutical company MediciNova, Inc., recently announced its intention to begin a Phase 2/3 clinical trial for its product MN-166. MN-166, also known…
Patient Worthy exists because there's just not enough visibility for the nearly 30 million Americans who have been diagnosed with disorders that are rare or have limited treatment options. So…
Besides the obvious need for ties within the medical, pharmaceutical, and social industries, I have always wondered internally why it is so necessary that parents, adults, children, and loved ones…
According to a story from Benzinga, the pharmaceutical company BioCryst Pharmaceuticals, Inc., recently announced that its investigational product BCX7353 has been granted Fast Track Designation from the FDA for the…
We're happy to introduce a new partner to Patient Worthy's mission of advocating for rare disease patients! The Aplastic Anemia and MDS International Foundation (AAMDS) supports, connects and educates patients, caregivers…
A study is planned to investigate the effects of the experimental drug PTC596 in children with recently diagnosed diffuse intrinsic pontine glioma and high-grade glioma. The study is made up…
July 13th was 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…
Who couldn’t use a little extra money now and again? Better still, what if earning that money was as easy as a mouth swab? According to a report on Journal…
According to a story from the FH Foundation, the non-profit organization has released a vital consensus statement regarding the diagnosis of familial hypercholesterolemia, which is the most prevalent genetic cause…
Patient Worthy’s partner the MDS Foundation will be hosting a patient forum on August 11th, 2018 from 9:30am-2:00pm "Whether you are a newly diagnosed patient, a long-term survivor, or a…
According to a story from The Sun, Alex was just two months old when he first experienced symptoms of xeroderma pigmentosum. His parents took him out to the park and…
Is there a genetic condition in your family? Are you concerned about the potential for passing this on to your children one day? Do you know if you are a…
Meet Ruby, a beautiful 3 year old who was diagnosed with hypomyelination with atrophy of basal ganglia and cerebellum, or H-ABC, shortly after her birth. H-ABC is a type of leukodystrophy…
According to a story from Pulmonary Hypertension News, It has been three years since Miloš Lazić had is first encounter with pulmonary arterial hypertension. As an active member of Serbia's…
According to a story from Physician's Weekly, a recent study found that small amounts of invisible blood in stool increases the possibility of early death from other causes. The study…
According to a story from Charcot-Marie-Tooth News, a recent study suggests that changes in the levels of two proteins in the body could serve as biomarkers to indicate the progression…
For anyone who has had to step into a doctor's office, you know the litany of emotions that run through your body. Anxiety, confusion, worry, exasperation - and to say…
The documentary The Bleeding Edge has just been made available on Netflix in the US and UK (27th July 2018). Described by Netflix as “controversial”, the documentary explores the impact…
I met Jon at the 2018 United Leukodystrophy Foundation Conference and had the privilege of learning his and his family's story. Jon was born in Wisconsin in 1992, joining the…
What do Dave Winfield, Steve Garvey, and Don Baylor Jr. all have in common? Besides all being big names in major league baseball, each of the famous athletes is contributing…
Meet Andrea Wilson Woods (pictured below with her little sister); an author, public speaker, career coach, organization founder, and patient advocate. In her early twenties, Andrea became the legal guardian…
Happy End-of-July! As the week comes to a close, we want to spotlight four articles. We have an honest piece from PW contributor, Tom Seaman. Next, we investigate the root…
Don't feel bad if you've haven't heard of hemochromatosis - that's why we are here! Hemochromatosis (also known as iron overload disorder) is a disease that is often under-diagnosed. It…
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