Super T’s Mast Cell Foundation was created in 2015 by my daughter Taylor upon receiving her diagnosis of mast cell activation disorder. After traveling over twenty hours to consult with…
Research During COVID Many medical research projects have faced hurdles since the pandemic has started. Regulators have changed development timelines, and many have had to delay their clinical trials due…
The Partnership A new partnership has just been announced between Mendelian, a digital health company for rare disease, and Modality NHS partnership, a rare disease diagnosis program. Together, these organizations…
Many people have questions about the COVID-19 vaccine, a number of them pertaining to the speed at which it was developed and approved. Rare disease patients are no exceptions. Barbra…
A recent announcement by Gilead Company citing data from Kite Pharma, one of its premier companies, set out remarkable results from Kite’s Zuma-1 clinical trial. The findings confirmed that…
As reported in PR NewsWire; in an effort to help the entirety of the sickle cell disease community, Emmaus Life Sciences, Inc has announced a program that will provide their…
Eurordis The European Organization for Rare Diseases (Eurordis) is a nonprofit organization which organizes over 930 rare disease groups into one alliance. Groups have joined the network from 73 different countries.…
Looking for a feel-good story? Then look no further. In December, telecom company Cox worked to make a difference for the rare disease community. The organization headed its Elite Gamer…
Laura Bonnell’s two children have cystic fibrosis (CF). This condition affects the respiratory system and can severely impact patient’s immune system. She explains how she didn’t own a single N95…
The Neurological Alliance has released a report that details the experiences that rare, neurological disease patients in the UK share and calls for improvements for these people. Experts in the…
Most people are aware of various symptoms caused by the stress that we experience on a day-to-day basis. However, there are a variety of physiological reactions that affect our peripheral…
No deal Brexit means that the UK will be excluded from the 24 ERNs (European Reference Networks). Without the sharing of information, data, and research across countries, rare disease research…
The Rare Disease Legislative Advocates (RDLA) held a webinar on December 3rd, 2020. This event focused on the organization's goal of passing Cures 2.0, a bill that would help further…
Before 1983, there were few treatments for rare diseases. Various obstacles stood in the way, including little representation for patients, few incentives, and a lack of resources. Fortunately, the Orphan…
Yash Cary knows what it's like to spend the holidays in the hospital. In fact, three of his last six Christmases have been at UNC Hospital. This is because Yash…
With the overall focus of the Reuters Pharma & Patient USA 2020 conference being the relationship between patients and drug manufacturers, a key topic focused on how companies can form…
According to an NBC AP news item, early results show that CRISPR, a “tool” that alters DNA permanently in blood cells, has the potential to not only stop the progression…
A recent article in the Encinitas Advocate heralded the dedication of Stan Crooke, n-Lorem Foundation’s CEO and founder. The nonprofit Foundation’s team acts as middlemen, working with patients who…
Meet Cameron Scott, eight-year-old superhero who has been declared free from his stage 4 brain cancer! Specifically, Cameron was diagnosed with medulloblastoma, a rare high-risk tumor which spread to his…
When she was born, Amy Parr was completely paralyzed from the neck down. Doctors were not optimistic about her future. Some said that she would not make it beyond her…
Many medical professionals have applauded artificial intelligence and machine learning in the drug development process for a long time, as they can increase the speed while decreasing the cost. However,…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
The Reuters Pharma & Patient USA 2020 virtual conference included a number of shorter presentations that focused on specific approaches to help drug companies better meet the needs of patients.…
According to a story from Charcot-Marie-Tooth News, the National Organization for Rare Disorders (NORD) is beginning a new initiative that will be the focus of a public virtual meeting that…
Just around a month ago, the National Organization for Rare Disorders (NORD) offered a webinar on how to create a patient registry or start a nonprofit organization. NORD's webinar, part…
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