Studies show that if your father's mother, your paternal grandmother, was diagnosed with ovarian cancer, you are at a higher risk for the disease than if your grandmother on your…
Happy June everybody! We hope everyone's ready to kick off their summer, whatever that may include. This week we have two stories from younger patients who are leveraging their own…
According to a story from apnews.com, President Trump signed the "Right to Try" bill passed by Congress into law on Wednesday, May 30th, 2018. During the signing ceremony, he was…
According to an article from Globe Newswire, the company Shire plc recently presented new data in relation to recombinant human parathyroid hormone (rhPTH) and its relationship to hypoparathyroidism. This information…
After years of resistance from the previously dominant Republican party, Virginia lawmakers were successfully able to pass a measure expanding Medicaid to nearly 400,000 more Virginians, according to the Washington…
According to a story from Telegraph & Argus, 56 year old Andrew Johnson is getting an innovative new procedure that is offered on the UK's NHS in order to relieve…
According to a story from BioPortfolio, the biopharmaceutical company Acceleron Pharma, Inc., recently announced that the Phase 2 trial for its proprietary, investigational product sotatercept. The medication is in development…
When others learn that you are the parent of a child with a rare disease, they most likely correctly assume that doctor appointments and hospitals might be involved. Yet few…
The not-for-profit healthcare organisation Sanford Health is planning to implement routine genetic testing for patients to identify a patient’s risk for a range of rare, and more common, diseases. The…
According to a story from polygon.com, Microsoft has developed a new Xbox Adaptive Controller that is tailored towards players that have reduced use of their hands and fingers. While there…
TGIF, everybody! This week we're sharing music videos by a singer who raises awareness for aHUS, a journey of a dysautonomia patient, and a story about a man who was…
According to a story from the Washington Post, an outbreak of Nipah virus has claimed a total of ten lives so far in south India. Medical teams are starting to…
According to a story from Cardiovascular Business, The FH Foundation, which is a frontrunning patient advocacy and research organization for familial hypercholesterolemia, recently announced that it has begun enrollment for…
Senator John McCain has been fighting for most of his adult life. Now is no different. He faces a battle with brain cancer. His daughter, Meghan supports him often in…
Here's something on the lighter side of disease prevention efforts! Earlier this month, the Centers for Disease Control and Prevention tweeted a photo of a poppy seed muffin which was meant…
May is national Cystic Fibrosis Awareness Month! Cystic fibrosis (CF) is a genetic condition that causes progressive respiratory and digestive system damage. Someone with CF has thick, sticky mucus, versus…
International Alliance Of Patients' Organizations hosts the 8th Global Patients Congress. 200 reps from different healthcare facets will provide expertise, connection, and knowledge related to patient healthcare. Registration is INVITE…
According to a story from Science Daily, a recent study found that a rigorous exercise program reduced fatigue in testicular cancer patients and helped boost their self-esteem. Patients with the…
According to a story from Medscape, the House of Representatives recently voted to pass a "right to try" bill. The bill they voted on was previously approved by the Senate…
The Alagille Syndrome Alliance (ALGSA) is preparing to host its first annual gala, The Gala of Dreams, this year on Saturday, June 30th, 2018 at the San Diego Marriott Del…
According to a story from the Tennessean, learning that both her husband and daughter had the rare and dangerous disease atypical hemolytic uremic syndrome (aHUS) was devastating for singer-songwriter Cameron…
In Canada, it is illegal to require a person to disclose results of genetic testing in any form of contract. The government of Quebec, however, recently issued a series of…
According to a story from BBC, Alex Hill was just eight-years-old when his mother, Sarah, started forming a hunch that something was off. The first warning sign came when Alex…
According to a story from news-medical.net, researchers working with the Institute for Experimental Pediatric Endocrinology of the Charité - Universitätsmedizin Berlin were able to successfully treat young patients that were obese…
International Clinical Trials Day #ClinicalTrialsDay #BecomeAWARE May 20th, 2018 International Clinical Trials Day is celebrated every year on May 20th. Communities use the day to remember the efforts of study volunteers…
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