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.
This year, the 2022 MDA Clinical & Scientific Conference began March 13, 2022 and is lasting through March 16, 2022. During the conference, stakeholders will discuss a variety of clinical…
Continue ReadingNeuBase Presents Preclinical Myotonic Dystrophy Type 1 Data at MDA 2022
Fast Track designation is granted by the FDA to facilitate the development and expedite the review of drugs to both fill unmet needs and treat serious or life-threatening conditions. Through…
In late February 2022, biopharmaceutical company Trascenta Holding Limited ("Trascenta") provided an update on its clinical program for TST001, a monoclonal antibody therapy designed for those with locally advanced or…
Continue ReadingICYMI: First Patient Dosed in TST001 Study for Biliary Tract Cancer
When Kacey Lamphier was just a child, her father Edward passed away from a ruptured aorta. Following his death, Kacey and her family were also tested. It was during this…
Continue ReadingGirl with Marfan Syndrome Named IWK Founders Club Ambassador
The Australian Sports Brain Bank was established in 2018 with a goal of better understanding chronic traumatic encephalopathy (CTE) and other conditions associated with repeated head injuries or blows to…
Continue ReadingCTE Found in Over Half of Donated Brains in Australian Sports Brain Bank
When Emily McGuyre first discovered that she was pregnant, she was thrilled. She greatly looked forward to bringing her son, Matthew, into her family. But, shares The Hawkeye, Emily learned…
In the past, you’ve probably heard about chronic traumatic encephalopathy (CTE) in relation to football. This rare neurodegenerative disorder has been linked to repeated blows to the head. But did…
Continue ReadingMore Years of Hockey Linked to Increased CTE Risk
Biotechnology company Genmab A/S recently shared that its investigational therapy epcoritamab (DuoBody-CD3xCD20), being developed with AbbVie, was granted Orphan Drug designation from the FDA. The therapy is designed for those…
Continue ReadingEpcoritamab for Follicular Lymphoma Granted Orphan Drug Designation
Typically, chronic urticaria – or chronic hives – can be managed using over-the-counter antihistamines. However, some people develop antihistamine-refractory chronic urticaria, which means that the condition cannot be managed even…
Continue ReadingLirentelimab Beneficial for Chronic Urticaria, Study Shares
Currently, there are few effective therapeutic options for patients with MuSK antibody-positive myasthenia gravis (MG). A majority of those with MG have autoantibodies targeting the acetylcholine receptor. As a result, acetylcholinesterase…
Millions of people worldwide are affected by bleeding disorders such as hemophilia, von Willebrand disease (vWD), Glanzmann thrombasthenia, and more. In 1986, President Ronald Reagan sought to raise awareness around…
In the past, some research has suggested that earlier screening for colorectal cancer – also known as rectal or colon cancer – could be beneficial for improving patient outcomes. For…
Continue ReadingYoung Adults Diagnosed with Late-Stage Colorectal Cancer at Rising Rates
What do MRIs of the head and spine, CT scans of the head with contrast dye, CT myelograms of the spine, and radioisotope tests all have in common? These are…
In 2015, Luke and Hayleigh Tate welcomed their daughter Maisy-Leigh into the world. However, following an emergency C-section, Maisy-Leigh was taken into critical care. The doctors noticed a number of…
When things in her life felt out of control, Ellen Samuels turned to poetry. This wasn’t necessarily abnormal for Ellen. As an English professor at the University of Wisconsin-Madison, Ellen…
Continue ReadingProfessor Writes Haikus Based on EDS Experience, Treatments
Have you ever heard of a biomarker? In short, a biomarker, or biological marker, is some sort of objective measure which can tell you something about your health or health…
Continue ReadingResearch Discovers New Ulcerative Colitis Diagnostic Marker
When Rachel Matthews birthed her twin boys, Aiden and Gavin, she was ecstatic. But just a day or two after Rachel had returned home with her boys, she received a…
There are three subsets of Von Willebrand disease (vWD), a genetic bleeding disorder. Type 3 is considered to be the most severe form of vWD, culminating in intense or severe…
Continue ReadingICYMI: VONVENDI Approved for Von Willebrand Disease
If you follow Major League Baseball (MLB), you’ve probably been inundated with news regarding the current lockout – and concerns over whether the season will begin on time. However, if…
Continue ReadingMLB Player Cedric Mullins Opens Up About Crohn’s Disease Diagnosis
How effective is UPLIZNA on treating attacks associated with neuromyelitis optica spectrum disorder (NMOSD)? According to a news release from biopharmaceutical company Horizon Therapeutics plc ("Horizon"), an analysis highlighted that…
Prior to February 2022, there were no approved treatments for those with cold agglutinin disease (CAD). However, that changed on February 4th, 2022, when the FDA announced that it had…
Continue ReadingSutimlimab Now FDA-Approved for Cold Agglutinin Disease
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, prevent, or diagnose rare diseases or conditions. A “rare” condition is one affecting under…
Continue ReadingKetamine Earns Orphan Drug Designation for Status Epilepticus
BRUKINSA (zanubrutinib) is a prescription medication which can be used to treat Waldenstrom macroglobulinemia (WM), mantle cell lymphoma, and marginal cell lymphoma. So far, the treatment has been approved in…
Continue ReadingSwitzerland Approves BRUKINSA for Waldenstrom Macroglobulinemia
Historically, both osteosarcoma and neuroblastoma have been difficult to treat. Therefore, new treatment options are needed for these cancers, which predominantly affect children and teenagers. According to Medical XPress, a…
Continue ReadingAntibody Combination Could Treat Neuroblastoma, Osteosarcoma
Within 48 hours following her son Kylan's birth, Emily Bussenschutt had already visited three separate hospitals searching for a diagnosis. 9Honey explains that Kylan was born with epidermolysis bullosa…
Continue ReadingMom Raises Epidermolysis Bullosa Awareness by Sharing Son’s Story
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