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 July 2022, Global Genes, a nonprofit 501(c)(3) organization and global advocate for those with rare diseases, awarded its Health Equity in RARE Patient Impact grants to members of…
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, diagnose, or prevent rare diseases or conditions. These are defined as conditions affecting fewer…
Before you read on, don't forget to check out Part 1 of our interview. In Part 1, we discussed Dr. Pariser's background, what hyperhidrosis is, and its symptoms and manifestations. Today, we'll…
In 2002, three-year-old Collin Johnson underwent a tonsillectomy. Just a couple of days later, after Collin woke up from a nap, Stormy noticed a large pool of blood on the…
In the medical world, it’s no secret that misdiagnoses happen. But these misdiagnoses can be costly; patients may miss out on earlier treatment and prevention, and misdiagnosis may correlate with…
Did you know that November is considered to be Hyperhidrosis Awareness Month? This awareness campaign is intended to share information about hyperhidrosis (a medical condition causing excessive and uncontrolled sweating),…
Mahesh Karande, the President and CEO of Omega Therapeutics, is incredibly passionate about epigenetics. And it shows: in the work that he and his team do, in the therapies they…
If you ask college basketball fans in Tennessee, they’ve probably heard of Zakai Zeigler. The 5’9 point guard, who originally hails from Long Island, now dominates the court as a…
So far, the Phase 2 EMPOWER-CSCC-1 clinical study has evaluated cemiplimab (also known as Libtayo) in individuals with locally advanced or metastatic cutaneous squamous cell carcinoma (cSCC). Data from…
In May 2022, 14-year-old Clara Motschenbacher and her family received frightening news. The teenager had Hodgkin’s lymphoma, a rare cancer that affects the lymphatic system. But according to Valley News…
Currently, there is no known cause for multiple sclerosis (MS). While many doctors consider MS to be an autoimmune disease, nobody knows what prompts this immune response. A combination…
It can be extremely difficult to incentivize drug development for rare diseases or conditions. To combat this, decades ago, the FDA created the Orphan Drug Act. Now, Orphan Drug designation…
Before you read on, make sure to check out Part 1 of our interview where we discuss what SLC6A1 is and Aubrey's diagnostic journey. Today, we'll be discussing what it's like to…
According to a late October 2022 news release from pharmaceutical company KalVista Pharmaceuticals, Inc. (“KalVista”), the company released positive data from a Phase 1 study evaluating oral sebetralstat for…
Before you read on, make sure to check out Part 1 of our interview. In Part 1, we discussed Dr. Sumeray's background, what hypoparathyroidism is, and its symptoms and treatments. Today, we're…
Both Libtayo (cemiplimab) and Keytruda (pembrolizumab) have been shown to be beneficial treatment options for patients with locally advanced or metastatic cutaneous squamous cell carcinoma (cSCC). But could Opdivo (nivolumab)…
When Erika Vandenberg learned that her daughter Aubrey had a rare genetic disorder called SLC6A1, her first two reactions were fear and relief. Relief because they finally had a name…
By Randall and Emma Barker Randall and Emma Barker have the unique experience of being a father and daughter both navigating life with Type 1 diabetes (T1D). With over two…
When it comes to drug development and medical research, particularly within the rare disease sphere, it is incredibly important for patients to feel involved in the process. After all, patients…
Newborn screening is a public health program in which infants are screened for various metabolic, genetic, and developmental disorders shortly after birth. Through newborn screening, doctors may identify potential disorders…
Currently, there are a number of therapies which can be used to treat individuals with dermatomyositis: corticosteroids, immunosuppressive agents, intravenous immune globulin (IVIG). Typically, corticosteroids are considered a first-line treatment,…
Prior to joining the Marine Corps, Jane Shepard was, for all intents and purposes, fairly healthy. However, after becoming stationed at Camp Lejeune in 1984, Jane’s health spiraled. She often…
Scientists affiliated with Massachusetts General Hospital (MGH) and Children's Hospital Philadelphia recently identified a novel mitochondrial disorder in a pair of identical twins. Doctors began studying these twins when…
In 2005, The Chronicles of Narnia: The Lion, the Witch, and the Wardrobe brought us into the fantastical world of Narnia. Much like in the novels, the film's stars journeyed to…
People within the rare disease community face many barriers in regard to the diagnostic process. It can take years to receive an accurate diagnosis. Paired with medical costs and…
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