May has been designated Behçet's disease awareness month - but unlike so many of the rare diseases we cover, there are not any advocacy organizations dedicated to raising awareness and support…
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…
Primary biliary cholangitis (PBC) is a rare disease, but you don’t have to face it alone. Join us for an educational program and connect with others who understand what you’re going…
Researchers at Columbia University have found a way to apply CRISPR, a tool used in gene therapies, to new types of disease, reports News Medical. The study was carried out…
A company called Beam Therapeutics is developing a new form of genetic editing, called ‘base editing’, to treat certain genetic diseases. The full story can be read here, at MedCity…
A California family has lost 12 family members to the newly discovered rare disease known as hereditary sensory and autonomic neuropathy type 1E (HSAN 1E), which involves a mutation on…
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…
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…
For a long time, researchers thought that chronic liver inflammation was the driving force of cancer, because the inflammation allows the cancer cells to divide, preventing them from dying. But…
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…
Last week saw the Food and Drug Administration’s (FDA) approval of Aimovig. Aimovig (generically referred to as erenumab-aooe) is a novel approach to treating migraines. It boasts the ability to…
Scientists working at the Broad Institute of MIT and Harvard are trying to build a collection of every drug ever developed. They are planning on using the collection to re-purpose…
According to a story from Financial Buzz, the pharmaceutical company Albireo Pharma recently announced that the first patient has been enrolled in its Phase 3 trial testing its experimental candidate…
This patient story is written by PW Contributor Kim Hartgraves. I was in the military for nine and a half years, until I had to accept an honorable under medical…
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…
Happy Friday, everybody! This week we're highlighting a celebration of rare moms, thoughts on the value of prayer in the rare community, and a PBC patient offering guidance on how…
Patient Worthy’s partner, The MDS Foundation, will be hosting another wonderful event for MDS patients and caregivers. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a…
A woman from the UK, whose husband was diagnosed with Parkinson's disease many years ago, has the unique distinction of being able to detect the disease in patients through a…
Last week Patient Worthy attended ALD Life’s Community Weekend 2018, where Anne and Joel Buckland from the marketing agency We Do Stories talked about how to bring attention to rare…
Sunday, May 20th is World Autoimmune Arthritis Day! The global awareness day is aimed at raising money, consciousness, and solidarity for the millions of people who suffer from one of many arthritic…
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