mastocytosis Archives - Patient Worthy

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Rare Community Profiles: What’s Your SMthing?: Pam’s Efforts to Create a Culture of Support and Awareness for Systemic Mastocytosis

Post author:Jessica Lynn
Post published:June 28, 2023
Post category:Systemic mastocytosis

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…

Photo courtesy of Tracy Kyttle

Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 3)

Post author:Jessica Lynn
Post published:February 28, 2023
Post category:mastocytosis Systemic mastocytosis Timely

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…

Photo courtesy of Tracy Kyttle

Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 2)

Post author:Jessica Lynn
Post published:February 27, 2023
Post category:mastocytosis Systemic mastocytosis

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…

Photo courtesy of Tracy Kyttle

Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 1)

Post author:Jessica Lynn
Post published:February 23, 2023
Post category:mastocytosis Systemic mastocytosis

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…

Positive Data Reported From Clinical Trial for Advanced Systemic Mastocytosis

Post author:Trudy Horsting
Post published:June 22, 2022
Post category:Systemic mastocytosis

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…

New Report Demonstrates How Dental Complications with Systemic Mastocytosis Should be Managed

Post author:Trudy Horsting
Post published:May 10, 2022
Post category:mastocytosis

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…

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HT-KIT Granted Orphan Drug Designation for Mastocytosis

Post author:Jessica Lynn
Post published:March 22, 2022
Post category:mastocytosis

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…

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EMA Recommends Changing Marketing Authorization for Avapritinib for Systemic Mastocytosis

Post author:Alyssa Stevens
Post published:February 28, 2022
Post category:mastocytosis

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…

Asymptomatic Solitary Cutaneous Mastocytoma Found In Child In a Rare Case

Post author:Alyssa Stevens
Post published:January 10, 2022
Post category:mastocytosis

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…

With Proper Training, Parents Can Save Their Child From Cutaneous Mastocytosis

Post author:Rose Duesterwald
Post published:October 27, 2021
Post category:mastocytosis

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…

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Jeff’s Advanced Systemic Mastocytosis Story

Post author:James Moore
Post published:September 27, 2021
Post category:mastocytosis

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…

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Masitinib Studies Suspended Over Ischemic Heart Disease Risk

Post author:Jessica Lynn
Post published:June 7, 2021
Post category:Amyotrophic Lateral Sclerosis COVID-19 mastocytosis

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,…

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Mastocytosis Worsens Venom Allergy Outcomes

Post author:Jessica Lynn
Post published:May 20, 2021
Post category:mastocytosis Systemic mastocytosis

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…

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Rare Classroom: Systemic Mastocytosis

Post author:James Moore
Post published:April 21, 2021
Post category:Systemic mastocytosis

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…

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Chronic Myeloid Leukemia Becomes A Category of Diseases

Post author:Sunniva Bean
Post published:April 8, 2021
Post category:Chronic Myelogenous Leukemia mastocytosis Myelofibrosis Polycythemia vera

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…

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Positive Data Announced from AYVAKIT Clinical Trials for Systemic Mastocytosis

Post author:Jessica Lynn
Post published:September 25, 2020
Post category:Systemic mastocytosis

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…

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The Latest Advances in Systemic Mastocystosis Molecular Biology Could Change Future Treatment

Post author:Patient Worthy Contributor
Post published:July 31, 2020
Post category:Systemic mastocytosis

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…

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The Drug Avapritinib Shows Potential for Treating Systemic Mastocytosis

Post author:James Moore
Post published:March 25, 2020
Post category:Rare Disease Systemic mastocytosis

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…

Finding an Effective Personalized Therapy for Mastocytosis can be Frustrating, but it is Possible

Post author:Trudy Horsting
Post published:May 6, 2019
Post category:Mast Cell Activation Syndrome mastocytosis Rare Disease

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…

Accidental Discovery Gives Insight into New Potential Method of Diagnosis for Mastocytosis

Post author:Trudy Horsting
Post published:April 16, 2019
Post category:mastocytosis Rare Disease

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…

New Phase 1 Clinical Trial for Mastocytosis, MDS, and AML has Just Begun!

Post author:Trudy Horsting
Post published:April 9, 2019
Post category:Acute Myeloid Leukemia mastocytosis Myelodysplastic syndromes Rare Disease

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…

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Stephanie’s Journey

Post author:Stephanie Lewis
Post published:November 8, 2018
Post category:Interstitial cystitis POTS

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 – Support Group Meeting – Chicago, IL

Post author:Meagan Fulps
Post published:May 19, 2018
Post category:

The Mastocytosis Society presents a support group meeting open to the public in Chicago, IL. Be sure to RSVP to Jeannie Dunn: [email protected]

The Mastocytosis Society – Support Group Meeting – Kansas City, MO

Post author:Meagan Fulps
Post published:May 5, 2018
Post category:

The Mastocytosis Society presents a support group meeting open to the public in Kansas City, MO. Be sure to RSVP to Cheri Smith: [email protected]

The Mastocytosis Society – Support Group Meeting – Oklahoma City, OK

Post author:Meagan Fulps
Post published:April 7, 2018
Post category:

The Mastocytosis Society presents a support group meeting open to the public in Oklahoma City, OK. Dr. Miner will be speaking. Be sure to RSVP to Cheri Smith: [email protected]

Rare Community Profiles: What’s Your SMthing?: Pam’s Efforts to Create a Culture of Support and Awareness for Systemic Mastocytosis

Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 3)

Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 2)

Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 1)

Positive Data Reported From Clinical Trial for Advanced Systemic Mastocytosis

New Report Demonstrates How Dental Complications with Systemic Mastocytosis Should be Managed

HT-KIT Granted Orphan Drug Designation for Mastocytosis

EMA Recommends Changing Marketing Authorization for Avapritinib for Systemic Mastocytosis

Asymptomatic Solitary Cutaneous Mastocytoma Found In Child In a Rare Case

With Proper Training, Parents Can Save Their Child From Cutaneous Mastocytosis

Jeff’s Advanced Systemic Mastocytosis Story

Masitinib Studies Suspended Over Ischemic Heart Disease Risk

Mastocytosis Worsens Venom Allergy Outcomes

Rare Classroom: Systemic Mastocytosis

Chronic Myeloid Leukemia Becomes A Category of Diseases

Positive Data Announced from AYVAKIT Clinical Trials for Systemic Mastocytosis

The Latest Advances in Systemic Mastocystosis Molecular Biology Could Change Future Treatment

The Drug Avapritinib Shows Potential for Treating Systemic Mastocytosis

Finding an Effective Personalized Therapy for Mastocytosis can be Frustrating, but it is Possible

Accidental Discovery Gives Insight into New Potential Method of Diagnosis for Mastocytosis

New Phase 1 Clinical Trial for Mastocytosis, MDS, and AML has Just Begun!

Stephanie’s Journey

The Mastocytosis Society – Support Group Meeting – Chicago, IL

The Mastocytosis Society – Support Group Meeting – Kansas City, MO

The Mastocytosis Society – Support Group Meeting – Oklahoma City, OK

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

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