For over three decades, Dr. Ben Katz and his research team have been treating patients with chronic granulomatous disease (CGD) and working to build a better understanding of the disease…
Before you read on, make sure you've checked out Part 1 of our interview, where we discussed what eosinophilic esophagitis is, its symptoms and diagnostic criteria, and why Dr. Dellon chose to…
The U.S. Food and Drug Administration (FDA) approved Dupixent for the treatment of moderate-to-severe atopic dermatitis in patients aged 6 months+; the drug is also approved as add-on maintenance therapy…
Before you read, make sure you check out Parts 1 and 2 of our interview. In Part 1, we discussed what Wegener's granulomatosis (GPA) is, Anna's diagnostic journey, and her first episode of symptoms.…
Before you read any further, make sure you've read Part 1 of our interview, where Anna and I discussed what Wegener's granulomatosis (GPA) is, her diagnostic journey, and how she managed her…
When Anna tells me about her diagnosis of Wegener’s granulomatosis just about thirty years ago, she shares that she does all that she can to not allow it to encompass…
Before reading, don't forget to head to Part 1 to learn more about Quris' founder Isaac Bentwich, why Quris was developed, and how the company is using its innovative bio-AI drug development…
Many people laud the accomplishments of clinical trials – and for, in some cases, good reason. Clinical trials have been crucial in identifying and developing therapeutic options for patients to…
Recent advances within the medical field have prompted the development of RNA therapeutics for many different applications. These therapeutics have the potential to greatly change the treatment landscape and create…
Don't forget to check out Part 1, where we discussed what multiple sclerosis (MS) is, went over Mo's diagnostic journey, and began talking about the importance of awareness. Treating Multiple Sclerosis…
For as long as she can remember, 30-year-old Ankona “Mo” Das has loved traveling. Traveling has provided a way to break out of her shell, to experience new landscapes, and…
Don't forget to read Part 1 of our interview, where we discussed what Costello syndrome is, Ryan's son Reynolds' diagnosis, and what spurred the family to want to make a change. mejo…
“My son has Costello syndrome, but he is not defined by his diagnosis,” Ryan Sheedy tells me about his son, Reynolds. To Ryan, his statement exemplifies his beliefs about needed…
Zach and Geri Landman are devoted parents and physicians – a pain specialist and pediatrician, respectively – committed to making the world a better place for those around them. They…
Don't forget to check out Parts 1 and 2 of our interview, where we discussed APFED, eosinophilic esophagitis (EOE), and Lori's diagnostic process. Today, in the final portion of the interview, we're…
If you're just joining us, don't forget to take a look at Part 1 of this interview. In Part 1, we discussed Lori and Mary Jo Strobel, what eosinophilic esophagitis (EOE) is,…
When you think about a visit to the dentist, it may – at first – seem innocuous, something that you need to take care of for your health. But for…
For the last two and a half years, the COVID-19 pandemic has dominated the headlines. It has been hard to look online – or do anything in person – without…
The Irish Times recently featured a book by Dr. Karl Herrup about “How Not to Study a Disease." Dr. Herrup is clear that he opposes the theory that the amyloid…
In Part 1 of our interview, we discussed Katharina's story, her diagnostic journey to Adult-Onset Still's Disease, and why she was driven to found Perrarus. For Part 2, we will…
Katharina Clark has always wanted to make a difference. For as long as she can remember, Katharina has held a keen interest in the healthcare sector. Before she was diagnosed…
The diagnosis of rare diseases can be difficult; they may share symptoms with other disorders, many are not well known, and many don't have specific diagnostic processes. Ankylosing spondylitis acts…
Katheron Intson is a passionate scientist; she likes understanding how and why things work the way that they do. So when Katheron’s friend reached out about a mysterious health problem,…
CureDuchenne is one of Patient Worthy's partner organizations. Patient Worthy partners with a variety of rare disease and patient-oriented non-profits in order to collaborate and help promote one another's activities.…
Make sure to check out Part 1 of our interview with Dan Pezzetta, an advocate for the rare disease and chronic illness communities. In Part 1, we dug into Dan's…
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