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.
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.…
Continue ReadingRare Community Profiles: The Monster Inside: How a Boundary-Breaking Treatment Helped Sean in His Battle with von Hippel-Lindau Syndrome
When he was just three years old, Florida State Seminoles outfielder Jaime Ferrer was diagnosed with type 1 diabetes, a chronic condition where the pancreas makes little to no insulin.…
Continue ReadingBoy Battling Cystic Fibrosis Finds Role Model in FSU Seminoles Outfielder
Cholera is an acute bacterial disease caused by Vibrio cholerae that can lead to severe diarrhea, vomiting, and even death. Although only 10% of cholera cases are considered severe, identifying…
Long COVID is a phenomenon emerging from the global spread of SARS-CoV-2, a strain of coronavirus causing COVID-19. Seven million people died from COVID-19, though this is considered a serious…
Continue Reading15-Day Paxlovid Regimen Fails to Deliver for People with Long COVID
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.…
Continue ReadingRare Community Profiles: Stigma Stops Anal Cancer Screenings, But Dr. Gary Bucher is Ready to Start Conversations on the Importance of Anal Health
Sometimes, the itch from seborrheic dermatitis can be - frankly - unreal. This common, chronic skin condition causes flaky, greasy, scaly, and itchy skin on different areas of the body.…
Continue ReadingMalassezia Yeast May Not Drive Seborrheic Dermatitis
Rare diseases are challenging. Not just for those affected, but for researchers, physicians, and drug developers. Rare diseases may affect small populations. Many are poorly understood and lack adequate awareness.…
Continue ReadingA Potential Methylmalonic Acidemia Therapy Will be Developed Under the FDA’s START Pilot Program
An estimated 80% or more of people with myotonic dystrophy type 1 (DM1) struggle with severe fatigue and excessive daytime sleepiness (EDS). While most people consider myotonia (inability to contract…
Continue ReadingSTUDY: Pitolisant Reduced Fatigue and Daytime Sleepiness in Adults with DM1
Researchers have previously linked TREX1 gene mutations to the development of a rare inherited small vessel disease called retinal vasculopathy with cerebral leukoencephalopathy (RVCL). What researchers didn't know was why these genetic…
Continue ReadingResearchers Identify Underlying Disease Mechanism in RVCL
Stemnovate is a biotechnology company working to transform the drug discovery landscape while improving diagnostics. Currently, the company hopes to develop a research platform for rare pediatric mitochondrial diseases such…
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.'…
Continue ReadingRare Community Profiles: The Only One Diagnosed in the US: Why Gabby is Starting Conversations on NLSD-M
Mirum Pharmaceuticals has long been a leader in the rare liver disease space, driving forward with a mission of empowering patients and families, and identifying novel therapeutic interventions to help…
Continue ReadingMirum Pharmaceuticals: Results Available from PBC and PSC Studies on Volixibat
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.…
Continue ReadingRare Community Profiles: Stiff Person Syndrome (SPS) Advocates Respond to Celine Dion’s Claims in “I Am: Celine Dion”
Three years after the U.S. Food and Drug Administration (FDA) first placed a full clinical hold on Larimar Therapeutics’ Phase 2 clinical study, the hold has officially been lifted. The…
Continue ReadingFDA Removes Clinical Hold on Nomlabofusp Study for Friedreich’s Ataxia
Have you ever heard of a biosimilar? A biosimilar is essentially a biologic that is highly similar in structure and function to a reference product. Although this might seem technical, it really…
Continue ReadingICYMI: FDA Approves BKEMV, A Soliris Biosimilar, for aHUS and PNH
Artificial intelligence (AI) is changing the way we live. It seems rare to find an industry where AI has not made at least a preliminary impact. In politics, AI-generated cartoons…
Continue ReadingThe Impact of Artificial Intelligence: Predicting Visual Acuity in DME Following Vabysmo Treatment
Trichophyton mentagrophytes type VII is a fungal species that are usually transmitted through environmental spores. This fungal infection normally causes skin issues in animals. But wait - there's more. Trichophyton…
Continue ReadingRare Fungal STI Trichophyton Mentagrophytes Type VII Has Reached the US
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.…
Continue ReadingRare Community Profiles: A New Treatment Option on the Horizon: Zevra Therapeutics’ Dan Gallo Discusses Arimoclomol, the NDA PDUFA Date, and the Needs of the NPC Community
Get ready to lace up your sneakers, grab your swim goggles, hop on your bike, or move the way you move best - all for a great cause! Uplifting Athletes,…
Continue Reading10,000 Mile Challenge: Uplifting Athletes Seeks to Support the Rare Disease Community
You've heard of kidney transplants. You've heard of liver transplants. And you've probably even heard of lung transplants. But have you heard of skin transplants? In many cases, skin transplants…
Continue ReadingHealthy Skin Transplants Could Successfully Treat Epidermolytic Ichthyosis and Ichthyosis with Confetti
Rare diseases and chronic illnesses do not discriminate. They do not care if you are young or old, where you come from, or how much money you make. With an…
Continue ReadingSinger Halsey Reveals Lupus and T-Cell Lymphoproliferative Disorder Diagnosis from 2 Years Ago
To the primary biliary cholangitis (PBC) community - it's time to rejoice! For the first time in nearly one decade, the U.S. Food and Drug administration (FDA) has approved a…
Continue ReadingFDA Approves Iqirvo for Primary Biliary Cholangitis (PBC)
Parenthood is about raising the child you have, not the child you thought you'd have. Anthony and Lindsey Terling shared this message in their video "The Austin Way!" where the…
Tafenoquine is an anti-malarial drug that interferes with parasitic growth in the body. But could it be repurposed for use in another parasitic illness? That's what pharmaceutical company 60 Degrees…
Continue ReadingTafenoquine Granted Orphan Drug Designation for Acute Babesiosis
Testing for rare conditions can be costly and time-consuming. In India, testing for spinal muscular atrophy (SMA), a rare genetic disorder, has traditionally cost between 3500 INR to 7000 INR…
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