Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
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.…
Don't forget to read Part 1 of our interview, where we discuss what Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are, and learn more about how Viktoria ended up hospitalized. Today,…
Ally and Jake Shaw always dreamed of having a big, happy family. The pair began their journey with their daughter Nala, now just under 3 years old, and later brought…
Postnatal Zika virus can cause other complications and health issues for those affected. According to Neurology Advisor, one such complication is Guillain-Barré syndrome (GBS). Researchers believe that GBS following postnatal…
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…
Viktoria Cupay is no stranger to raising awareness about underserved and invisible illnesses. In 2016, two years after she began searching for a diagnosis, Viktoria found out that she was…
It can sometimes be difficult to spur research and drug development within the rare disease space. For this reason, the Orphan Drug Act was created. The Orphan Drug Act provided…
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…
When Josh Wright, 13, was younger, he always seemed to be somewhat of a sickly child. His mother Julie remembers Josh's first hospitalization at just one year old; her…
In 2012, the FDA established its Rare Pediatric Disease designation initiative through the Food and Drug Administration Safety and Innovation Act. Rare Pediatric Disease designation is granted to drugs or…
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…
Have you ever heard of dysgeusia? Dysgeusia is a condition in which someone's taste is altered, making all foods taste either bitter, sour, sweet, or metallic. Research has shown…
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…
It’s no secret that being a part of the chronic illness and/or rare disease community can sometimes be lonely and isolating. Many people, while empathetic to the challenges faced within…
Have you ever heard of Orphan Drug designation? This designation is granted by the FDA for drugs or biologics intended to treat, diagnose, or prevent rare conditions. Rare conditions…
Last year, Mandy Moore, 38, celebrated as she brought her son Gus into the world. Known for her roles in This Is Us, A Walk to Remember, and Saved (among many others), Mandy…
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…
According to a news release from biopharmaceutical company BridgeBio Pharma, Inc., the first patient was dosed in a Phase 1 study. Researchers are evaluating the safety, tolerability, pharmacodynamics, and pharmacokinetics…
Near the start of August 2022, biotechnology company Inmagene Biopharmaceuticals ("Inmagene") and biopharmaceutical company HUTCHMED shared via news release that the first participant had been dosed in a Phase…
Both the 3rd Annual Gene Therapy for Neurological Disorders meeting and the ADVANCE 2022 Sanfilippo Community Conference were held in July 2022. During both meetings, researchers presented new data from…
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…
In the United States, Orphan Drug designation is a special status granted to drugs or biologics intending to treat, prevent, or diagnose a rare disease or condition. A "rare" condition…
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…
For those living with sickle cell disease (SCD), treatment and management can sometimes be difficult. Currently, there is no cure for SCD. Patients may manage their condition using antibiotics,…
Patient Worthy would like to wish a Happy 2nd Birthday to one of our partners, the TAPS Support Foundation. It is hard to believe that it has only been two…
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