Eastern equine encephalitis (EEE) is a rare condition that can be spread through the bites of infected mosquitos. In a majority of cases, birds are infected with EEE. However, if…
Have you ever thought about your genes and what they do for your body? For example, the KRAS gene—do you know what it does? Normally, KRAS encodes for the production…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Written by Katherine Tran Lupus is among the most perplexing autoimmune diseases. It can be debilitating when not regulated, with symptoms ranging from butterfly-shaped rashes across the face to fatigue,…
Written by K.M. I have never given much thought to how I would die. Perhaps because my health and longevity has been laid out for me since infancy. Maybe I…
In the last decade, NAFLD in pregnancy has nearly tripled in concert with the worldwide increase in diabetes. Mayo Clinic reports that NAFLD in general affects one-fourth of the…
Marsha Calloway-Campbell lives a full life as a lawyer, business owner, wife to her husband Armaray, mother to her three adult daughters, and “Naun” to her toddler grandson. But her…
Gene therapy has seemed out of reach for decades. Yet advocates have considered it a way to have damaged or missing genes restore dystrophin and other proteins. Doctors and advocates…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
For many rare diseases, gene therapy, not traditional therapeutics, is perhaps the only means to significant relief and cure. However, the path to gene therapy has been strewn with obstacles…
A Business Wire Press Release on April 26, 2023, announced positive interim clinical data on an investigational RNAi therapeutic. Alnylam Pharmaceuticals and its partner Regeneron Pharmaceuticals heralded interim results…
Canada’s unemployment rate is at a record low. Industries have recovered 126% of the jobs lost by the pandemic. On the health front, scientific knowledge and the ability to…
For patients with refractory or relapsed KMT2A rearrangement or NPM1-mutations, the AUGMENT 101 study of the investigational menin inhibitor revumenib yielded impressive results. According to an article in MedicalXpress,…
Clinical trials are often mentioned as an afterthought when discussing the length of time it takes for drugs to be approved by the FDA. On the contrary, clinical trials are…
Prasanna Shirol, Executive Director of the Organization for Rare Diseases India (ORDI), expresses his opinion to the Times of India about the urgency to address the issue of rare…
Throughout her life, Hallie Hale has always been drawn to dance. There was something equally challenging and relaxing, hypnotic and focused, about what she could achieve. Her parents knew…
3-year-old Ava Bolton has always been bright, vivacious, and gregarious. So her parents Natalie and Scott were understandably worried when, near her third birthday, Ava's affect seemed to change. According…
In a late April 2023 news release, biotechnology company UNITY Biotechnology, Inc. ("UNITY") shared that the company had observed positive long-term follow-up data from the Phase 2 BEHOLD trial. Within…
According to an article published in Cold Agglutinin News, Dianthus Therapeutics (“Dianthus”) is planning on holding a proof-of-concept study in 2024. Within the study, the company would evaluate the safety…
In December 2022, Representative Jamie Raskin (D-MD) shared with the public that he had been diagnosed with diffuse large B-cell lymphoma (DLBCL). Although being diagnosed with cancer can be frightening,…
People with severe cases of Eastern equine encephalitis (EEE) or Venezuelan equine encephalitis (VEE) can develop significant brain inflammation, causing damage. An estimated 33% of people with severe EEE infection,…
This weekend during the Leiden Marathon, more than 30 parents, children, doctors, researchers and members of the public will run to raise money for the Well Bee Study. This important…
In the past, budesonide has been used in a number of therapeutic indications, such as to reduce proteinuria in IgA nephropathy or digestive tract inflammation in those with Crohn's disease.…
Have you been struggling with gastrointestinal (GI) issues? Does your stomach ache? Have you been throwing up or experiencing diarrhea—but you’re not quite sure why? Well, you might have alpha-gal…
In 2021, Josie Gosney entered the world and her parents couldn’t be more thrilled. When she was first born, Josie showed signs that something might be right. But after a…
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