series – Page 5 – Patient Worthy

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Rare Community Profiles: Casting a Light on the Intersection of Mental Health and Chronic Illness: How Elle’s IgAN Journey Inspired Her to Help Others

Post author:Jessica Lynn
Post published:September 6, 2023
Post category:IgA Nephropathy IgA Nephropathy (IgAN)

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…

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Study of the Week: Exercise Provides Major Benefits in Chronic Lymphocytic Leukemia

Post author:James Moore
Post published:September 5, 2023
Post category:Chronic Lymphocytic Leukemia

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…

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Science Simplified: Blood-Brain Barrier Part 1

Post author:Patient Worthy Contributor
Post published:September 1, 2023
Post category:Rare Disease SLC13A5 deficiency

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…

source: shutterstock

Rare Classroom: Norrie Disease

Post author:James Moore
Post published:September 1, 2023
Post category:Norrie disease

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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Rare Community Profiles: How Madhumita’s Scimitar Syndrome Diagnosis Empowered Her to Understand the Importance of Mental Health

Post author:Jessica Lynn
Post published:August 30, 2023
Post category:Scimitar syndrome Timely

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…

source: shutterstock

Rare Classroom: Severe Combined Immunodeficiency

Post author:James Moore
Post published:August 25, 2023
Post category:Severe Combined Immunodeficiency Severe combined immunodeficiency with sensitivity to ionizing radiation

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…

Photo courtesy of Amanda Chaffin

Rare Community Profiles: Fiercely Advocating for the SMA Community: Why Amanda Will Never Stop Fighting for her Son Kayden

Post author:Jessica Lynn
Post published:August 23, 2023
Post category:Spinal Muscular Atrophy

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…

source: shutterstock

Rare Classroom: Arginase Deficiency Disorder

Post author:James Moore
Post published:August 18, 2023
Post category:Arginase deficiency

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…

source: shutterstock

Rare Classroom: WHIM Syndrome

Post author:James Moore
Post published:August 11, 2023
Post category:WHIM syndrome

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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Study of the Week: Using AI to Find a New Treatment for Cystinosis

Post author:James Moore
Post published:August 7, 2023
Post category:Cystinosis Cystinosis- ocular nonnephropathic

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…

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Rare Classroom: Sézary Syndrome

Post author:James Moore
Post published:August 4, 2023
Post category:Cutaneous T-cell Lymphomas Sezary syndrome

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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Rare Community Profiles: AlphaID At Home Provides Accessible, Targeted Screening for Alpha-1 Antitrypsin Deficiency (AATD)

Post author:Jessica Lynn
Post published:August 1, 2023
Post category:Alpha-1 Antitrypsin Deficiency Alpha-1 antitrypsin deficiency

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…

source: shutterstock

Rare Classroom: Lafora Disease

Post author:James Moore
Post published:July 28, 2023
Post category:Lafora disease

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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Study of the Week: Some New Drugs Don’t Offer Meaningful Value Over Old Ones

Post author:James Moore
Post published:July 23, 2023
Post category:Rare Disease

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…

source: shutterstock

Rare Classroom: Mycosis Fungoides

Post author:James Moore
Post published:July 21, 2023
Post category:Cutaneous T-cell Lymphomas mycosis fungoides

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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Rare Community Profiles: Empathy through Art: A Mission to Raise Hypoparathyroidism Awareness

Post author:Jessica Lynn
Post published:July 19, 2023
Post category:hypoparathyroidism

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…

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Science Simplified: Understanding Your SLC13A5 Epilepsy Care Team

Post author:Patient Worthy Contributor
Post published:July 17, 2023
Post category:Rare Disease SLC13A5 deficiency

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…

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Study of the Week: Investigational Treatment Shows Promise for Treating Nonalcoholic Steatohepatitis

Post author:James Moore
Post published:July 17, 2023
Post category:Nonalcoholic fatty liver disease Nonalcoholic steatohepatitis

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…

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Celebrate Gastroschisis Month with Jeanie and Her Gastroschisis Baby

Post author:Rose Duesterwald
Post published:July 14, 2023
Post category:Gastroschisis

The incidence of gastroschisis has doubled over the past 20 years. Read “Jeanie’s Gastroschisis Baby” and learn from a brave, young first-time mom about discovery and how Gastroschisis can be…

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RDLA Webinar: Rare Disease Legislation at the Federal Level

Post author:James Moore
Post published:July 13, 2023
Post category:Rare Disease

On June 21, 2023, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives…

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Study of the Week: Using Deep Learning to Track Retinitis Pigmentosa Progression

Post author:James Moore
Post published:July 10, 2023
Post category:Retinitis pigmentosa

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…

source: shutterstock

Rare Classroom: Polyarticular Juvenile Idiopathic Arthritis

Post author:James Moore
Post published:July 7, 2023
Post category:Juvenile idiopathic arthritis

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…

Photo courtesy of Kenzi Cabrera

Rare Community Profiles: Kenzi’s Commitment to Raising Familial Cold Autoinflammatory Syndrome (FCAS) Awareness

Post author:Jessica Lynn
Post published:July 5, 2023
Post category:Familial cold autoinflammatory syndrome Juvenile idiopathic arthritis Thalassemia

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…

source: shutterstock

Rare Classroom: Apert Syndrome

Post author:James Moore
Post published:June 30, 2023
Post category:Apert Syndrome

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…

source: shutterstock.com

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…

Rare Community Profiles: Casting a Light on the Intersection of Mental Health and Chronic Illness: How Elle’s IgAN Journey Inspired Her to Help Others

Study of the Week: Exercise Provides Major Benefits in Chronic Lymphocytic Leukemia

Science Simplified: Blood-Brain Barrier Part 1

Rare Classroom: Norrie Disease

Rare Community Profiles: How Madhumita’s Scimitar Syndrome Diagnosis Empowered Her to Understand the Importance of Mental Health

Rare Classroom: Severe Combined Immunodeficiency

Rare Community Profiles: Fiercely Advocating for the SMA Community: Why Amanda Will Never Stop Fighting for her Son Kayden

Rare Classroom: Arginase Deficiency Disorder

Rare Classroom: WHIM Syndrome

Study of the Week: Using AI to Find a New Treatment for Cystinosis

Rare Classroom: Sézary Syndrome

Rare Community Profiles: AlphaID At Home Provides Accessible, Targeted Screening for Alpha-1 Antitrypsin Deficiency (AATD)

Rare Classroom: Lafora Disease

Study of the Week: Some New Drugs Don’t Offer Meaningful Value Over Old Ones

Rare Classroom: Mycosis Fungoides

Rare Community Profiles: Empathy through Art: A Mission to Raise Hypoparathyroidism Awareness

Science Simplified: Understanding Your SLC13A5 Epilepsy Care Team

Study of the Week: Investigational Treatment Shows Promise for Treating Nonalcoholic Steatohepatitis

Celebrate Gastroschisis Month with Jeanie and Her Gastroschisis Baby

RDLA Webinar: Rare Disease Legislation at the Federal Level

Study of the Week: Using Deep Learning to Track Retinitis Pigmentosa Progression

Rare Classroom: Polyarticular Juvenile Idiopathic Arthritis

Rare Community Profiles: Kenzi’s Commitment to Raising Familial Cold Autoinflammatory Syndrome (FCAS) Awareness

Rare Classroom: Apert Syndrome

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

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