According to a report by the New York Times, a group of researchers tested the health benefits of bacteria this summer. Specifically, researchers aimed to determine if they were able…
According to a story from Shawnee Mission Post, the nonprofit organization RareKC is working to support people with rare diseases that are living the Kansas City area. When living with…
The biotechnology company Synlogic announced positive data from its most recent Phase 1/2a clinical trial of its experimental product SYNB1618. This trial did not test the therapeutic action of the…
Patients living with PKU (phenylketonuria) have hope as researchers look into new drugs that may help the body break down phenylalanine. PKU is an genetic disease in which the body lacks…
"Advance the Dream" This conference will be a chance for PKU patients and their families to learn the latest about PKU research and treatment from disease experts. The event will…
The National Society for Phenylketonuria (NSPKU) is holding their PKU Diet Challenge today. The diet challenge is specifically aimed at MPs (Members of Parliament in the UK-- aka, not me),…
On June 28th, 2018, the National Society for Phenylketonuria (NSPKU) is holding a special event that is meant to challenge Members of Parliament (MPs) across the UK. This challenge is…
According to a story from fiercebiotech.com, the gene therapy startup Generation Bio managed to fundraise $100 million in a little over a month. In its prior series A round of…
Andy Trapp is a videographer who runs AB Trapp Productions, a small business documenting weddings and family occasions. He has been living with uncontrolled PKU since the age of 8.…
Andy Trapp is a videographer who runs AB Trapp Productions, a small business documenting weddings and family occasions. He has been living with uncontrolled PKU since the age of 8.…
It is absolutely and unequivocally clear : “The PKU diet must include a medical product, usually consumed as a beverage. There are several brands available that are nutritionally suitable for…
Her name is Jennifer Payne and if you haven't already read about her on Patient Worthy, she's something of a rare disease revolutionary. Her advocacy work on phenylketonuria (PKU) has…
Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…
There's a serious, rising issue brewing over health care coverage for Phenylketonuria (PKU) and it's a steaming pile of outrage. If you haven't heard of this rare disease, here's the…
Welcome back Patient Worthians! We are back this week from the 2017 Global Genes Rare Advocacy Summit. Did you attend? If so, what did you learn? Let us know here. This…
Recently on Recombine, a website dedicated to providing up-to-date blog posts about planning a healthy family, a story popped up from a young woman sharing her experiences about being a…
The 1960s were a time of social rebellion and reform. The Civil Rights Movement, the feminist movement, and Vatican II all rose from a growing sense of dissatisfaction with the…
Happy Pre-Thanksgiving Week Friends! It is almost Thanksgiving which is one of our FAVORITE holidays here at Patient Worthy. Why? Because on this holiday, we are focused on gratitude, family and…
Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act in the lame duck session ! The Everylife Foundation Action Center is calling for your action on November…
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