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.
In the early 1990s, Dean Kamen was at the mall when he came up with an idea. After seeing a man in a wheelchair struggle to be noticed by…
As many of us know, funding is a crucial part of medical research and innovation, particularly within the rare disease realm. Recently, the Lupus Research Alliance (LRA), in conjunction…
In 2014, Ki’tay D. Davidson passed away at the age of 22. A black, transgender activist, Ki'tay also used his voice to amplify the experiences and stories of people…
Altogether, there are many foods that promote your health, provide protection against disease, and improve bodily function. According to researchers, there is one that we should be paying more…
The Plasmodium vivax (P. vivax) parasite commonly leads to malaria infection. In fact, around 7.5 million malaria cases result from the parasite. But the tricky part about P. vivax…
Biotechnology company Talaris Therapeutics, Inc. submitted an Investigational New Drug (IND) application to the FDA for their novel cell therapy treatment FCR001. As per a press release, the FDA…
In a July 9 press release, the Familial Chylomicronemia Syndrome (FCS) Foundation announced its support for a bill introduced by Congressman Paul Tonko (D-NY) and David B. McKinley (R-WV).…
Within the medical realm, clinical trials play a crucial role in understanding disease progression, medication safety and efficacy, and patient outcomes. Recently, PTC Therapeutics began a Phase 1 clinical…
For many people with Parkinson’s disease, “levodopa” is well-known. Parkinson’s disease is a central nervous system disorder caused by the death of dopaminergic neurons. As a precursor to dopamine,…
At one point in his journey with cystic fibrosis, Marc Cotterill experienced a rapid loss in lung function. In fact, it dropped to just 29%. As his health worsened,…
Around 10 million people worldwide are living with Parkinson's disease, a progressive nervous system disorder impacting movement. While there are many current and proposed treatments, the medical community continues…
After three years, patients with Leber hereditary optic neuropathy (LHON) who had been treated with LUMEVOQ experienced sustained safety and efficacy. According to a press release from GenSight Biologics,…
In a recent press release, the U.S. Food and Drug Administration (FDA) announced their approval of Inqovi for patients with myelodysplastic syndromes (MDS) and chronic myelomonocytic leukemia (CMML). The…
Launched in January of 2020, and ending in May, the BEAT-PD Dream Challenge was designed to understand whether passive data collected from sensors could track symptom severity and disease progression…
As you probably know, our bodies are extremely complex. Every day, there are multiple processes working to help us live, breathe, work, eat, and more. But did you know…
Throughout 2020, the medical community and much medical research has been centered around COVID-19, a novel coronavirus turned global pandemic. With just around 11 million diagnosed cases, COVID-19 presents…
Each and every day, the medical community (and the world) learn more about COVID-19. What began as a novel coronavirus in Wuhan, China has turned into a global pandemic…
According to a recent press release, EspeRare received Breakthrough Therapy Designation for its investigational therapy ER-004, designed for the prenatal treatment of X-linked hypohidrotic ectodermal dysplasia (XLHED). Ultimately, this…
In some cases, people have a medical condition that doesn't respond well to treatments. The journey to finding an effective treatment can be long and difficult. But for patients…
When it comes to researching and finding treatments for rare diseases, funding plays a crucial role. Recently, the Medical Research Future Fund (MRFF) Stem Cell Therapies Mission presented Monash…
One huge goal throughout the medical world is to find effective and well-tolerated treatments for patients with cancer. According to News Medical, researchers recently discovered one beneficial treatment for…
Since the dawn of time, the human body has changed to cope with microbes and environmental changes. As a result, specific gene mutations evolved to protect populations from harm.…
In 2019, Alnylam Pharmaceuticals received FDA approval for Givlaari, the first RNAi therapy for patients with acute hepatic porphyria. Although some were initially worried about the therapy's safety and…
In 2016, 6-year-old Alec Ahmad loved club soccer, playing games with his two brothers, and running around with his friends at recess. He was full of energy. But every once…
At the end of June, the National Hemophilia Foundation (NHF) released a warning to patients with hemophilia regarding AT132, an investigational gene therapy candidate. Developed by Audentes Therapeutics, AT132 uses…
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