Editor's Note: Patient Worthy is honored to present this story, shared with us by our friends at The Mast Cell Disease Society. To see the article in its original format,…
Cogent Biosciences has announced new clinical trial results indicating that its drug BEZUCLASTINIB offers promising benefits for patients with indolent systemic mastocytosis (ISM), a rare and chronic disorder characterized by…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Ready to read? Before you do, make sure to check out Parts 1 and 2 of Tracy's story. In Part 1, Tracy describes the symptoms that led her to pursue a diagnosis. Part 2…
Before you read on, make sure to check out Part 1 of Tracy's story. In Part 1, Tracy discusses the symptoms that led her to pursue a diagnosis and the multi-year diagnostic…
Ten years ago, Tracy Kyttle moved from New England to the DC Metro Area to pursue a career in education leadership. She loved the area’s duality: its proximity to nature…
Cogent Biosciences has just released promising initial data from their Phase 2 clinical trial called APEX. This trial is investigating bezuclastinib, a selective KIT D816V inhibitor, as a treatment for…
Mastocytosis refers to an entire group of disorders. All of these conditions are characterized by a rapid production of mast cells (MCs), which are abnormal. This overproduction can occur in…
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, prevent, or diagnose rare diseases or conditions. Rare conditions are defined as those affecting…
According to a recent article, the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) is now recommending changing the marketing authorization for avapritinib, which is used…
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A case study recently reported that an asymptomatic 12-year-old boy was diagnosed with a solitary cutaneous mastocytoma in a rare case. Cutaneous Mastocytosis Cutaneous mastocytosis affects the skin, causing small flat brownish…
Anaphylaxis, which is usually caused by an allergic attack or an insect bite, is a rapidly occurring episode and may be fatal. According to an article published in Mastopedia, due…
Jeff was first diagnosed with systemic mastocytosis early in life, at age 16. The first sign that Jeff knew that something was off was when he developed urticaria pigmentosa, abnormal…
Altogether, AB Science has been evaluating a tyrosine kinase inhibitor, masitinib, for a variety of conditions including amyotrophic lateral sclerosis (ALS), COVID-19, and mastocytosis. But according to ALS News Today,…
The first time I got stung by a wasp, my knee swelled up to nearly 4x its size. While my allergy is more frustrating than fatal, I know that I…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
As seen in the Journal MDPI, chronic myeloid leukemia only got its name in the mid-1800s, when doctors drew together the category based on the occurrence of a “suppuration of…
In a recent press release, precision therapy company Blueprint Medicines Corporation announced positive results from two clinical trials: EXPLORER and PATHFINDER. The trials examined the safety, efficacy, and tolerability…
By Lauren Thayer from In The Cloud Copy Systemic mastocytosis (SM) is a complicated condition of the blood in which excessive numbers of mast cells (a type of white blood…
According to a story from mdmag.com, a phase 2 trial testing the drug avapritinib as a treatment for systemic mastocytosis is currently ongoing. The results so far suggest that the…
What Exactly is Mast Cell Disease According to The Mastocytosis Society (TMS), there are three forms of mast cell disease. All involve the malfunction or over-development of mast cells in…
Mastocytosis Mastocytosis is a rare disease caused by mutations in the KIT gene. The condition causes mast cells to accumulate in the body. Depending on the location of these immune…
GT Biopharma has just announced that their Phase 1 clinical trial for Mastocytosis, Myelodysplastic Syndrome (MDS), and Acute Myeloid Leukemia (AML) has been authorized to begin. Although this investigation had previously…
Hello. My name is Stephanie Lewis. I am 48 years old and have been ill over half my life. I have been diagnosed with Asthma, CFS, IBS/C, Interstitial cystitis, dysautonomia,…
The Mastocytosis Society presents a support group meeting open to the public in Chicago, IL. Be sure to RSVP to Jeannie Dunn: [email protected]
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