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.
Prednisone, oral steroids, intravenous hydrocortisone, and even blood transfusions are used to treat autoimmune hemolytic anemia (AIHA). AIHA comprises of warm AIHA, mixed AIHA, or cold agglutinin disease (CAD). Some…
Continue Reading
STUDY: 33% of Adults with Severe Autoimmune Hemolytic Anemia Responded Well to Add-On IVIG
source: pixabay.com
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 Reading
Rare Community Profiles: The Monster Inside: How a Boundary-Breaking Treatment Helped Sean in His Battle with von Hippel-Lindau Syndrome
source: shutterstock.com
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 Reading
Boy 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…
Continue Reading
NASA Forecasting Tool Identifies Potential Cholera Outbreaks
source: pixabay.com
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 Reading
15-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 Reading
Rare Community Profiles: Stigma Stops Anal Cancer Screenings, But Dr. Gary Bucher is Ready to Start Conversations on the Importance of Anal Health
source: shutterstock.com
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 Reading
Malassezia Yeast May Not Drive Seborrheic Dermatitis
source: shutterstock.com
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 Reading
A Potential Methylmalonic Acidemia Therapy Will be Developed Under the FDA’s START Pilot Program
Source: https://unsplash.com/photos/ZHys6xN7sUE
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 Reading
STUDY: 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 Reading
Researchers Identify Underlying Disease Mechanism in RVCL
Source: pixabay.com
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…
Continue Reading
Volunteers Needed for Alpers Syndrome Study
source: pixabay.com
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 Reading
Rare Community Profiles: The Only One Diagnosed in the US: Why Gabby is Starting Conversations on NLSD-M
source: shutterstock.com
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 Reading
Mirum Pharmaceuticals: Results Available from PBC and PSC Studies on Volixibat
source: pixabay.com
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 Reading
Rare Community Profiles: Stiff Person Syndrome (SPS) Advocates Respond to Celine Dion’s Claims in “I Am: Celine Dion”
source: pixabay.com
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 Reading
FDA Removes Clinical Hold on Nomlabofusp Study for Friedreich’s Ataxia
source: shutterstock.com
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 Reading
ICYMI: 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 Reading
The Impact of Artificial Intelligence: Predicting Visual Acuity in DME Following Vabysmo Treatment
source: pixabay.com
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 Reading
Rare 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 Reading
Rare 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
source: pixabay.com
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 Reading
10,000 Mile Challenge: Uplifting Athletes Seeks to Support the Rare Disease Community
source: shutterstock.com
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 Reading
Healthy Skin Transplants Could Successfully Treat Epidermolytic Ichthyosis and Ichthyosis with Confetti
https://pixabay.com/en/microphone-sound-music-1261793/
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 Reading
Singer Halsey Reveals Lupus and T-Cell Lymphoproliferative Disorder Diagnosis from 2 Years Ago
Source: Pixabay
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 Reading
FDA Approves Iqirvo for Primary Biliary Cholangitis (PBC)
Source: Pixabay.com
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…
Continue Reading
2nd Annual Aces Fore Austin Golf Tournament Raises Rare Disease Funds, Awareness, and Hope
source: shutterstock.com
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 Reading
Tafenoquine Granted Orphan Drug Designation for Acute Babesiosis