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.
Chronic spontaneous urticaria (hives) - an itch that can't be scratched. Well, from a literal perspective, you can scratch. But the chronic nature of chronic spontaneous urticaria means that your hives will…
Immunotherapy, targeted therapy, surgery, radiation, chemotherapy, intravesical treatment - oh my! These therapeutic options have all been used to treat individuals living with urothelial carcinoma. But the treatment landscape has…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
In December 2023, clinical-stage biopharmaceutical company Savara Inc. announced that the company had launched a serum-based blood test to aid in diagnosing autoimmune pulmonary alveolar proteinosis (aPAP). While aPAP is…
Genes hold the key to our health. Through revolutionary gene therapy solutions, the medical field is transforming to laud the power and precision of personalized medicine. Gene therapy has the…
In the hallowed halls of Colgate University, a young man named Greg Hadley found his calling in an unexpected place: the field of rare diseases. Little did he know that…
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 December 2023, pharmaceutical and biotechnology company Moderna announced that results from a Phase 2/3 clinical trial were published in The New England Journal of Medicine. The study explored an mRNA-based…
For the first six months of his life, Oliver Mills seemed to be developing fairly normally. He was a happy, bubbly baby. His mother Laurel found joy in every smile,…
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.…
Omega-3 fatty acids like alpha-linlenic acid or docosahexaenoic acid are "healthy fats" that are found in foods like flaxseed, fish, soybeans, and canola oil; they may also be given via…
In December 2023, clinical-stage biopharmaceutical company Clene Nanomedicine ("Clene") shared that it had met with the U.S. Food and Drug Administration (FDA) regarding Accelerated Approval for CNM-Au8®, an experimental therapy…
The research landscape for Duchenne muscular dystrophy (DMD) has been steadily increasing. Researchers are exploring more therapies, including gene therapies, that could transform the lives of those with this rare…
In 2015, the U.S. Food and Drug Administration (FDA) approved NUCALA (mepolizumab) for the treatment of severe eosinophilic asthma in adolescents and adults ages 12 and older, and by 2022,…
In mid-January 2023, Kristi Rosa of OncLive reported that the European Medicines Agency (EMA) granted Orphan Drug designation to pimicotinib (ABSK021) for inoperable tenosynovial giant cell tumors (TGCT). Orphan Drug…
Do you have cystic fibrosis? Are you searching for a stronger sense of community? Then BreatheCon, the unique virtual event spearheaded by the Cystic Fibrosis Foundation, is perfect for you! …
Acknowledgment: This story is sponsored by Kite, a Gilead Company and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
In the United States, companies must obtain approval from the U.S. Food and Drug Administration to run clinical studies and transport or distribute therapies across state lines. To do so,…
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 the past, Hyqvia [immune globulin infusion 10% [human] with recombinant human hyaluronidase] was approved to treat people with primary immunodeficiencies (PIs) ages two and older. Now, following data from…
In the European Union, Orphan drug designation is granted by the European Commission (EC) to drugs or biologics that are intended to diagnose, prevent, or treat rare conditions. The definition…
Both a hemithyroidectomy and total thyroidectomy are surgical interventions for people with low-risk differentiated thyroid cancer. Prior studies suggest that survival rates following these surgeries are relatively equal for these…
Unfortunately, clinical studies do not always work out the way they’re expected to. Biopharmaceutical company Mirum Pharmaceuticals, Inc. (“Mirum”) learned this after the Phase 2 EMBARK trial failed to meet…
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