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.
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…
Give the gift of life this holiday season and consider donating your bone marrow to BeTheMatch. Each year, over 18,000 people are diagnosed with a life-threatening blood condition that could…
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…
Heterozygous familial hypercholesterolemia (HeFH) can be difficult to control on available standard-of-care cholesterol-lowering medications. Therapeutic interventions are needed to reduce high LDL cholesterol levels and improve health and quality-of-life for…
The American College of Rheumatology (ACR) held its annual scientific meeting -- ACR Convergence 2023 -- from November 10 to 15. During the meeting, stakeholders throughout the field shared insights…
In 2005, the U.S. Food and Drug Administration (FDA) approved abatacept for the treatment of moderate-to-severe rheumatoid arthritis. Twelve years later, in 2017, the FDA expanded the drug's approval…
When Kara Roberts learned that she was pregnant with a daughter, she was thrilled. While her pregnancy itself was relatively normal, Roberts learned that her daughter, Scarlett, would need one…
Ask any doctor about neuroblastoma and they'll tell you: this rare cancer, which forms from immature nerve cells, predominantly affects children who are five years old or younger. So when…
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.…
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…
Vascular endothelial growth factor (VEGF) has been proven to increase how permeable blood vessels are in the eyes, causing them to leak. When new blood vessels form, these may also…
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