Sarcoidosis – Patient Worthy

Rare Community Profiles: #RAREis: Advancing Clinical Trial and Patient Equity with the Foundation for Sarcoidosis Research’s Mary McGowan

Post author:Jessica Lynn
Post published:June 4, 2024
Post category:Sarcoidosis

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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Cyclist Shares Her Story During Sarcoidosis Awareness Month

Post author:Jessica Lynn
Post published:April 8, 2024
Post category:Sarcoidosis

April is Sarcoidosis Awareness Month. During this month, people with sarcoidosis, caregivers, physicians, and other supporters come together to amplify the stories of those affected, reinforce the importance of continued…

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Sarcoidosis: Case Study of Presentation as Isolated Orbital Granuloma

Post author:James Moore
Post published:January 2, 2024
Post category:Sarcoidosis

According to a story from Healio, the rare disease sarcoidosis can affect a number of areas and systems in the body, such as the eyes, skin, lymph nodes, and lungs.…

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Rare Classroom: Sarcoidosis

Post author:James Moore
Post published:December 8, 2023
Post category:Sarcoidosis

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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Off-Label Treatment Shows Promise for Sarcoidosis

Post author:Jessica Lynn
Post published:March 10, 2023
Post category:Sarcoidosis

If current estimates are correct, around 10% of people with sarcoidosis within the United States are using off-label TNF-alpha inhibitors such as Remicade (infliximab). But according to an article in…

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Study of the Week: Pulmonary Microbiota is Significantly Less Diverse in People with Sarcoidosis

Post author:James Moore
Post published:February 27, 2023
Post category:Sarcoidosis

Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…

People with Sarcoidosis Have Less Diverse Pulmonary Microbiota Than Healthy Individuals

Post author:Jessica Lynn
Post published:February 24, 2023
Post category:Sarcoidosis

Have you heard of the pulmonary microbiota, which may also be referred to as the lung microbiome? This refers to the complex collection of microorganisms (bacteria, viruses, bacteriophages, fungi) that…

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Efzofitimod Granted Orphan Drug Designation for Sarcoidosis in the European Union

Post author:Jessica Lynn
Post published:February 10, 2023
Post category:Sarcoidosis Timely

Over 30 million people in the European Union (EU) are living with a rare disease. Yet rare disease drug development is still somewhat stifled. Orphan designation helps to incentivize drug…

Pregnancy Considerations for Women With Interstitial Lung Disease and an Autoimmune Condition

Post author:Trudy Horsting
Post published:January 11, 2022
Post category:Interstitial lung fibrosis Polymyositis Sarcoidosis

A retrospective medical records study for interstitial lung disease (ILD) has just been published in Arthritis Care & Research. The results found that for women diagnosed with ILD as well as an…

Photo by Robina Weermeijer on Unsplash

ATYR1923 Safe and Effective for Pulmonary Sarcoidosis

Post author:Jessica Lynn
Post published:October 18, 2021
Post category:Sarcoidosis

Clinical trials can be helpful tools in determining the safety, efficacy, tolerability, recommended dose, and pharmacokinetics of specific drugs (among other things). In doing so, these trials help tell researchers…

Photo by Robina Weermeijer on Unsplash

RLF-100 for Sarcoidosis Receives Orphan Drug Designation

Post author:Jessica Lynn
Post published:August 10, 2021
Post category:Sarcoidosis

In an August 3rd news release, biopharmaceutical company RELIEF THERAPEUTICS Holding AG ("Relief") shared that its therapy RLF-100 (aviptadil) for sarcoidosis received Orphan Drug designation from the FDA. This…

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From 1997-2018, Scleritis Lowered 34% in the UK, Study Shares

Post author:Jessica Lynn
Post published:April 8, 2021
Post category:Rheumatoid Arthritis Sarcoidosis Uveitis

According to Healio, recently published data suggests that the incidence of scleritis lowered by around 34% over a 22-year period within the United Kingdom. Scleritis, which occurs when the sclera…

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April is Sarcoidosis Awareness Month: Spreading Rare Disease Awareness

Post author:James Moore
Post published:April 6, 2021
Post category:Sarcoidosis

The month of April is recognized as Sarcoidosis Awareness Month, a time for spreading awareness about sarcoidosis among the general public and the medical community. The Foundation for Sarcoidosis (FSR)…

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Lymphocytes and Inflammation Tell Researchers about Active Sarcoidosis

Post author:Jessica Lynn
Post published:March 10, 2021
Post category:Sarcoidosis

If you've ever looked into the field of medical research, you may have heard the term biomarker. In short, a biomarker is a type of measurable sign or indicator which suggests…

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Study: What is the Role of Fibrocytes and Endothelial Progenitor Cells in Lung Sarcoidosis?

Post author:Kendall Mason
Post published:January 7, 2021
Post category:Sarcoidosis

A study published in BMC Pulmonary Medicine focuses on the role of endothelial progenitor cells and fibrocytes in lung sarcoidosis. They specifically investigated how these cells, along with CD34 + cells, spurred…

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Rare Classroom: Sarcoidosis

Post author:James Moore
Post published:January 6, 2021
Post category:Sarcoidosis

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…

Study: The Relationship Between Obesity, Lung Diseases, and Pulmonary Hypertension in Transplant Patients

Post author:Rose Duesterwald
Post published:December 10, 2020
Post category:pulmonary arterial hypertension Pulmonary fibrosis Sarcoidosis

The United States is coping with an obesity epidemic. It is therefore critical to understand the distribution of body fat and its effect on treatment. A recent article in Healio…

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Sarcoidosis Patient Hailed as Hero After Helping Save Customer’s Life

Post author:James Moore
Post published:August 28, 2020
Post category:Sarcoidosis

According to a story from eminetra.com, 37 year old sarcoidosis patient Sonja Nixon Frazier sprung into action when she was working at Taco Bell. She along with two workers knew…

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Real Progress is Being Made for Sarcoidosis in the Last Few Months

Post author:James Moore
Post published:June 9, 2020
Post category:Rare Disease Sarcoidosis

According to a story from Sarcoidosis News, while the global challenge of the COVID-19 pandemic has been an obstacle for advancement in many rare diseases with trials and research grinding…

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April is Sarcoidosis Awareness Month: Spreading Awareness About Sarcoidosis

Post author:James Moore
Post published:April 8, 2020
Post category:COVID-19 Sarcoidosis

April is designated as Sarcoidosis Awareness Month. This year's event will be the sixth annual awareness campaign, which will involve collaboration between the Foundation for Sarcoidosis Research and the American…

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The Challenge of Living with Multiple Rare Diseases

Post author:James Moore
Post published:April 2, 2020
Post category:Psoriatic Arthritis Rare Disease Sarcoidosis Sjogren’s Syndrome

According to a story from pharmaphorum.com, Jim Kuhn had a successful career in business for over 30 years, but everything changed a decade ago when he was first diagnosed with…

Is Poverty a Rare Disease? A Woman in North Carolina with Sarcoidosis Shares Her Struggle

Post author:Rose Duesterwald
Post published:April 1, 2020
Post category:Rare Disease Sarcoidosis

Pam Kelley, a reporter whose focus is on the challenges facing people below the poverty level, submitted this story to the Charlotte Magazine. Pam conducted interviews with Cheryl Potts over…

One Charlotte Woman’s Struggle With the ‘Getting Ahead’ Myth

Post author:Patient Worthy Contributor
Post published:March 30, 2020
Post category:Sarcoidosis

For generations, economists, pundits, and holders of public office have told the poor that pulling themselves out of poverty was just a matter of acquiring the right skills, making the…

Dermatologists Urge Caution When Using Skin Creams

Post author:Rose Duesterwald
Post published:November 11, 2019
Post category:Lichen planus follicularis Pemphigus and pemphigoid Sarcoidosis

An article by Dr. Syavra Tipirneni, dermatologist, recently appeared in BioSpectrum News. Dr. Tipirneni points out that we often succumb to our desire for perfect skin without the realization…

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Phase 2a Trial of Experimental Pulmonary Arterial Hypertension Drug Begins

Post author:James Moore
Post published:August 7, 2019
Post category:Idiopathic Pulmonary Fibrosis pulmonary arterial hypertension Sarcoidosis

According to a story from BioSpace, the biopharmaceutical company Altavant Sciences has recently announced that the first patient has been dosed in a phase 2a proof of concept trial. This…

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Rare Community Profiles: #RAREis: Advancing Clinical Trial and Patient Equity with the Foundation for Sarcoidosis Research’s Mary McGowan

Cyclist Shares Her Story During Sarcoidosis Awareness Month

Sarcoidosis: Case Study of Presentation as Isolated Orbital Granuloma

Rare Classroom: Sarcoidosis

Off-Label Treatment Shows Promise for Sarcoidosis

Study of the Week: Pulmonary Microbiota is Significantly Less Diverse in People with Sarcoidosis

People with Sarcoidosis Have Less Diverse Pulmonary Microbiota Than Healthy Individuals

Efzofitimod Granted Orphan Drug Designation for Sarcoidosis in the European Union

Pregnancy Considerations for Women With Interstitial Lung Disease and an Autoimmune Condition

ATYR1923 Safe and Effective for Pulmonary Sarcoidosis

RLF-100 for Sarcoidosis Receives Orphan Drug Designation

From 1997-2018, Scleritis Lowered 34% in the UK, Study Shares

April is Sarcoidosis Awareness Month: Spreading Rare Disease Awareness

Lymphocytes and Inflammation Tell Researchers about Active Sarcoidosis

Study: What is the Role of Fibrocytes and Endothelial Progenitor Cells in Lung Sarcoidosis?

Rare Classroom: Sarcoidosis

Study: The Relationship Between Obesity, Lung Diseases, and Pulmonary Hypertension in Transplant Patients

Sarcoidosis Patient Hailed as Hero After Helping Save Customer’s Life

Real Progress is Being Made for Sarcoidosis in the Last Few Months

April is Sarcoidosis Awareness Month: Spreading Awareness About Sarcoidosis

The Challenge of Living with Multiple Rare Diseases

Is Poverty a Rare Disease? A Woman in North Carolina with Sarcoidosis Shares Her Struggle

One Charlotte Woman’s Struggle With the ‘Getting Ahead’ Myth

Dermatologists Urge Caution When Using Skin Creams

Phase 2a Trial of Experimental Pulmonary Arterial Hypertension Drug Begins

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

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

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