According to a story from Myeloma Crowd Crowdcare Foundation, the very first Plasma Cell Disorder Congress recently took place in Charlotte, NC from August 10-11, 2019. The event primary focused…
According to a story from ProPublica, the computer servers that store important patient medical data are surprisingly unprotected. This lack of protection appears to be a problem around the world,…
According to a post from gaucherdisease.org, clinical trials are an essential component to the development and testing of new therapies for Gaucher disease and other rare diseases. For some rare…
A minimum of seven people have died after contracting Eastern Equine Encephalitis (EEE), a rare disease carried by mosquitoes, bringing number of total people affected to 27 in six states.…
Tay-Sachs Disease September is Tay-Sachs Disease Awareness Month. Voted on by the Senate unanimously in 2008, this month aims to spread awareness about this disease and the importance of carrier…
According to a story from scienmag.com, a pair of five year grants that were awarded to Dr. Mark Zylka will go towards projects focused on autism and the rare disease…
According to a story from the Washington Post, Bob Schwartz is a walking, talking medical mystery. He lives with a strange and diverse array of difficult symptoms, and after being…
Rare Disease Diagnostics Summit "Reducing the Diagnostic Odyssey to Improve Patient Outcomes" Boston, Massachusetts The diagnostic component of genetic rare diseases must be addressed. More than 350 million people are…
According to a story from Benzinga, the medical device company V-Wave Ltd. has recently announced that a product in development by the company has earned Breakthrough Device designation from the…
According to a press release from CTD Holdings, the American Food and Drug Administration (FDA) recently approved an Expanded Access application from a physician to treat a pediatric Niemann-Pick disease…
RARESummit 2019 Patients as Partners RARESummit 2019 is a rare disease conference unlike any other. The emphasis of this event is patient-centricity and partnership in the process of rare disease…
A recent study, published in Nature, examined whether or not stem cells could be modified to reduce their chance of rejection. Stem cell therapies are utilized in a wide array…
A recent publication from Specialty Pharmacy Times noted that the rapidly-growing number of available human immunoglobulin treatments for primary immunodeficiency disorders could pose challenges for specialty pharmacists when treating patients.…
According to a recent publication from Express Digest, England's National Health Service (NHS) has reversed its earlier position on a rare disease drug after lengthy public debate, now agreeing to…
Allostasis Allostasis is a concept coined by Joseph Eyer and Peter Sterling, colleagues at the University of Pennsylvania. In 1981 they published a paper which contested previous theories on the…
The Eighth China Rare Disease Summit The China Rare Disease Summit is the largest rare disease focused event held in China. A variety of rare disease stakeholders from across the…
Happy Thursday everyone! We're seeing more and more leaves falling over here, and the weather is genuinely beinning to cool down. Today, we're lighting a two part patient story covering…
Bob Hussey Bob Hussey is a 62-year-old mechanical engineer who, thanks to his own experience as an ulcerative colitis patient, has created a new invention that could help a wide…
By: Maria Palombini, IEEE-Standards Association For more than a decade there has been much propaganda on educating and encouraging patients to manage their healthcare. This was a direct shift in response…
The Global Genes RARE Patient Advocacy Summit This conference will be a convergence of a variety of rare disease stakeholders, such as rare disease patients, world renowned experts, and caregivers.…
According to a story from Duke Cancer Institute, Chantal Rose-Denman, age 44, has been a runner ever since she was a teenager. 17 years ago she made the switch to…
According to a story from Medscape, a recent study is highlighting the fact that many thyroid cancer survivors are still worried about cancer-related problems years after the conclusion of treatment.…
According to a story from Newswise, Holly Becker was only 24 years old when she was first diagnosed with non-Hodgkin lymphoma. However, her life was saved with a stem cell…
Recently, a well-paid celebrity, being afraid that her daughter wouldn't be accepted by the college of her choice, paid a "fixer" to help the girl by cheating on the results…
According to a story from wearegreenbay.com, a team of scientists associated with the University of Wisconsin, Madison are undertaking a project that will help improve the effectiveness of research related…
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