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.
Sophie Hinchcliffe, best known by her online moniker of Mrs. Hinch, knows how to clean up a mess. After all, her cleaning skills are what launched her into popularity…
In August 2022, I first interviewed Ryan Sheedy, the Co-Founder of mejo, a company dedicated to creating tools and resources designed to support caregivers and parents. Sheedy discussed how…
Over 10,000 rare diseases have been identified globally, a large majority of which are genetic in origin. But despite the scope of rare diseases, treatment can still be difficult to…
In 2019, South Carolina Governor Henry McMaster signed Dylan’s Law into effect. This law was passed in the wake of Dylan Emery’s death. The young boy had Krabbe disease, a…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Gene therapy has the potential to improve outcomes among individuals across various disease spectrums. In the case of clinical-stage biotechnology company Rocket Pharmaceuticals, the company is working to develop…
In 2019, Adam Sorgi began teaching psychology, health sciences, and AP psychology at Capistrano Valley High School: the same school that he had attended as a teenager. That same…
Right now, there are insufficient treatment options for familial chylomicronemia syndrome (FCS). Unfortunately, this means that individuals living with this rare genetic disease are left without much assistance. The…
Mesothelioma can sometimes be difficult to treat. The cancer can spread to nearby tissue and nerves, and often isn’t diagnosed until later stages. Admittedly, there are a number of…
When Taya Crowell first began feeling fatigued, they didn’t feel too worried. After all, Crowell had just changed schools and was grappling with a suddenly heavier course load. But by…
Have you ever had an itch that you just can't seem to scratch? Intensely itchy skin, also known as pruritus, is a hallmark characteristic of many conditions that affect the…
An estimated 2-4% of people worldwide have fibromyalgia, a chronic disorder characterized by musculoskeletal pain, fatigue, and issues with mood, sleep, and memory. This disorder, which affects women more…
Past studies have shown that our gut microbiota, or the collection of microorganisms (bacteria, archaea, fungi, yeast, viruses) within our gut, plays an immense role in our health. Our…
Sometimes it can be difficult to talk about our health. For people living with genital cancers, there are sometimes additional burdens: a fear of discussing a "taboo" topic, concerns…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
About 150,000 people with glaucoma across the United States wear contact lenses—and they may soon have access to an even more effective wearable treatment option. According to Medical Device Network,…
In early 2022, the U.S. Food and Drug Administration (FDA) approved Carvykti (ciltacabtagene autoleucel) for the treatment of patients with multiple myeloma. Carvykti is a BCMA-directed T cell immunotherapy.…
Earlier this year, I interviewed Dr. Arthur Suckow, the CEO and co-founder of DTx Pharma, about the innovative RNA therapeutics being developed for Charcot-Marie-Tooth disease type 1A (CMT1A). In…
Given that glioblastoma tumors are capable of making their own blood supply, these tumors are often aggressive and difficult to treat. The current standards-of-care are still relatively ineffective. As…
The Progeria Research Foundation reports that as of March 2023, there are 193 children and young adults living with progeria or progeroid laminopathies in 51 countries across the globe.…
If you’ve ever heard of alpha-synuclein before, you may have heard it described in relation to Parkinson’s disease. Alpha-synuclein clumps in the brain; while doctors are still trying to…
This year, the American Society of Gene & Cell Therapy (ASGCT) held its 26th annual meeting from May 16 through May 20, 2023. In a news release, biotechnology company…
As it currently stands, it can be difficult to diagnose a rare disease. Many patients require multiple specialist visits over years (the average rare disease diagnosis takes 4-5 years,…
Although the 5-year survival rate for pancreatic cancer has slightly risen (from 11% to 12%), there is still much work to be done. Pancreatic cancer can be difficult to treat.…
Did you know that June is considered Dravet Syndrome Awareness Month? Every year, people within the Dravet syndrome community come together to amplify stories, raise awareness, and encourage the general…
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