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 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…
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New Collaboration to Develop Toripalimab for Nasopharyngeal Carcinoma
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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…
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Ocean County Advances Bill to Create Rare Disease Advisory Council
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…
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Rolling NDA Completed: Maralixibat for Alagille Syndrome
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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…
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MTV’s Cheyenne Floyd Raises VLCAD Awareness for Rare Disease Day
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…
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Hong Kong Patent Granted to Synthetic Hypericin for CTCL
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…
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XELJANZ for RA Misses Co-Primary Safety Endpoint
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…
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Australian Patent Issued for Trehalose (SLS-005) for Neurodegenerative Disorders
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…
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NEXPOVIO for Multiple Myeloma Receives Positive CHMP Opinion
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…
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NDA Submitted with Priority Review: Zeposia (ozanimod) for Ulcerative Colitis
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…
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First Participant Dosed in SPK-3006 Trial for Pompe Disease
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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…
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Patient-Powered ACCELERATE Registry Raises Castleman Disease Awareness
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…
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11-oxyandrogens Can Be Used as CAH Biomarkers
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…
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NKCC1 May Worsen NGLY1 Deficiency Severity
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…
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Commentary Advocates for Improvements in Cerebral Palsy Care
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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.…
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New Partnership Will Explore Prognostic Tests for Pediatric Crohn’s Disease
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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…
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Partnership Will Bring Alkindi for CAH to China
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…
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Professor Putting $460K Grant Towards CTE Study
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,…
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Researchers Study Sleep and CKD
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…
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Patent Granted for DYN101 for Centronuclear Myopathy
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…
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Neuromuscular Junction Changes Cause CMT2D Degeneration
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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…
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Deadly Cholera Outbreak Claims Lives in Nigeria
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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…
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Could Oleic Acid Treat Multiple Sclerosis?
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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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Successful Type B Meeting Regarding EB-101 Clinical Trial for RDEB
At the very start of the new year, researchers out of the Washington University in St. Louis shared some exciting medical research: the discovery of two gene variants, associated with…
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Researchers Discover Genetic Cause of Chiari Malformation
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Each year, January 24 marks International Alagille Syndrome Awareness Day. During this day, organizations across the globe raise awareness around Alagille Syndrome (ALGS), from offering educational resources to allowing patients…
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Mirum Launches Awareness Campaign on Alagille Syndrome Awareness Day