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.
Over the last three decades, researchers and doctors have noticed a concerning trend: increasing cases of eosinophilic esophagitis (EoE), a chronic digestive system disorder, in infants and children. In particular,…
For months, 47-year-old Jane Lightfoot struggled with what she thought was a nasty ear infection. The spot behind her right ear ached; she was dizzy, couldn’t hear well, and the…
An estimated 75% of women will develop vulvovaginal candidiasis (a vaginal yeast infection) during their lifetime, with a significant number (approximately 140 million women worldwide) experiencing recurrent yeast infections.…
A Phase 1/2 clinical trial sought to evaluate the potential of vepdegestrant as a therapeutic option for heavily pretreated individuals with estrogen receptor-positive (ER+) and HER2 negative (HER2-) advanced…
When drugs enter into clinical studies, both patients and drug developers alike hope for success. These therapies could transform the treatment sphere, especially in disease states with limited or…
This year, the National Organization for Rare Disorders (NORD) held its annual Breakthrough Summit from October 16-17 in Washington, D.C. During the Breakthrough Summit, NORD celebrated its 40th anniversary and…
When it comes to caregiving for a family member, loved one, or other individual living with any type of health issue, there is an enormous financial, emotional, and mental burden…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
In 2017, following data from the Phase 2 CHRONOS-1 study, the U.S. Food and Drug Administration (FDA) granted Accelerated Approval to Aliqopa (copanlisib) for adults living with relapsed follicular lymphoma.…
Treating cancer can be challenging. While there are many different potential therapeutic options designed for people with cancer, these treatments are not always effective. Chimeric antigen receptor (CAR) T cell…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Historically, drug development within the rare disease space has been stifled; companies tend to focus on developing therapies for bigger patient populations that will be more impactful and more…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
During the ACG Annual Scientific Meeting, which took place this year from October 20 through 25, one presenter shared insights into a multicenter retrospective cohort study which explored the efficacy…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
As shared by MedScape, the U.S. FDA recently approved the first treatment for people living with congenital thrombotic thrombocytopenic purpura (TTP). Its name? Adzynma. In the past, people with TTP…
When 38-year-old Shereen-Fay Griffin went to the local swimming pool, she was hoping for some fun and relaxation. Instead, she contracted a rare but serious infection that left her blind…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
In the United States, Orphan Drug designation is granted by the U.S. FDA to therapies or biologics intended to treat, diagnose, or prevent rare conditions affecting fewer than 200,000…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
In 2010, Eddie Vedder (well known for his musical career in Pearl Jam) co-founded the EB Research Partnership (EBRP) alongside wife Jill and a group of parents whose children…
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