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.
On her 23rd birthday, Sara Lefebvre almost died. After having some drinks with friends, her friend drove Sara home. But Sara didn't make it inside; she collapsed in sub-zero temperatures,…
According to Medical XPress, new research suggests that removing microRNA from triple negative breast cancer cells can reduce the cancer's spread and progression. The research also found that microRNA could…
In a recent press release, biopharmaceutical company Junshi Biosciences ("Junshi") announced a burgeoning collaboration with leading biologics platform company Coherus BioSciences, Inc. ("Coherus"). The pair is working to develop and…
Last year, 92.7 WOBM reporter Vin Ebenau sat down with Allie and Jonna Crocker, two sisters who live around the Jersey Shore, to discuss their experience with rare diseases. The…
In a recent press release, biopharmaceutical company Mirum Pharmaceuticals, Inc. ("Mirum") shared that the company finished its rolling New Drug Application (NDA) submission. The NDA focuses around maralixibat, an investigational…
Okay, I'll admit it -- I'm a bit of a reality TV junkie. So I have been watching Cheyenne Floyd's journey since her initial entrance on Are You The One? Season 3…
Recently, biopharmaceutical company Soligenix, Inc. shared that it had been granted a patent (#16102842.8) in Hong Kong for the use of synthetic hypericin to treat patients with cutaneous T-cell lymphoma…
Unfortunately, a post-marketing safety study did not go so well for Pfizer, whose drug XELJANZ (Tofacitinib) failed to meet one of its co-primary endpoints. Biospace explains that XELJANZ is designed…
In a press release from late January 2021, biopharmaceutical company Seelos Therapeutics, Inc. ("Seelos") announced the issuance of an Australian patent for Trehalose (SLS-005). The patent (#2019204513) centers around the…
According to a recent press release, pharmaceutical company Karyopharm Therapeutics Inc. ("Karyopharm") achieved a milestone in the NEXPOVIO (selinexor) drug development process. The Committee for Medicinal Products for Human Use…
In a news release from biopharmaceutical company Bristol Myers Squibb, the company shared that the FDA accepted its supplemental New Drug Application (sNDA). Because the sNDA was submitted alongside…
At the start of February, gene therapy company Spark Therapeutics ("Spark") announced that the first participant in the RESOLUTE trial was dosed with SPK-3006. The trial is evaluating the…
Sometimes it can be difficult to study or learn about rare diseases, especially when there are not many patients. For example, only an estimated 30,000 Americans have Castleman disease. Yet…
How can researchers diagnose and study disease progression if typical biomarkers are unavailable or inconclusive? This very issue arose during a study on congenital adrenal hyperplasia (CAH). As shared in…
Since Bertrand Might was first diagnosed with NGLY1 deficiency in 2012, medical research around this extremely rare genetic condition has expanded. Unfortunately, Bertrand passed away in October 2020. However, his…
Recently, research professors from Michigan Medicine - the University of Michigan shared new commentary around cerebral palsy. Specifically, the commentary focuses on current research, policies, and care associated with adults…
For pediatric patients with Crohn's disease, it can be difficult to predict how the condition may progress, as well as whether or not it will respond well to treatment.…
In 2018, China declared congenital adrenal hyperplasia (CAH) to be a rare disease, and it is estimated to affect 1 in every 6084 Chinese births. However, there are currently…
Research grants are fantastic ways to support research in multiple spheres. This is especially important in the sphere of rare diseases and rare conditions, in which research is heavily needed…
We have always known that getting a good night's sleep is crucial for everything from memory and anxiety to overall health. But how does a poor night's sleep affect us,…
In late January 2021, Dynacure, a clinical-stage drug development company focused on rare diseases, announced that it was granted a patent (U.S. Patent No. US 10, 865, 414) for its…
What are neuromuscular junctions and how do they play a role in the development of Charcot-Marie-Tooth disease (CMT)? According to Charcot-Marie-Tooth News, researchers discovered that structural neuromuscular junction changes caused…
In the Bomadi and Burutu areas of the state of Delta, within Nigeria, the main source of water is the Forcados River. According to Brittanica, the Forcados flows through freshwater…
How much does our diet play a role in underlying health issues? In some cases, it might play an even larger part than we believe. As recently reported in Yale…
In a recent press release, clinical-stage biopharmaceutical company Abeona Therapeutics Inc. ("Abeona") shared that the company had a successful Type B meeting with the FDA. During the meeting, Abeona explained…
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