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…
As someone who has suffered with chronic vertigo for the past year and a half, and who deals with a chronic vestibular condition, I know all too well how debilitating…
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…
The hemoglobin A1C test is a test that is commonly used to determine if patients have diabetes. A study last year in February 2017, by the American Medical Association found…
New research is showing that patients sometimes use crowdfund websites to pay for fake stem cell transplants and other dubious medical procedures, according to a story from medicalxpress.com. Crowdfunding websites…
According to a story from CTV News, Triss Hunter is a junior at Ecole Mission Senior Secondary School in the Fraser Valley. This year, she is not being permitted to…
PBCers Organization hosts the 2018 PBC Conference to connect, learn and empower. The event is catered to patients, and their family and friends to educate through medical speakers. Registration fees:…
Whenever a rare disease family is in crisis, which happens all too frequently, the request for prayers goes out to others, knowing that the response will bring about comfort. Rare…
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