Rare Community Profiles – Page 3

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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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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…

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…

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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…

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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…

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…

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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…

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Rare Community Profiles: Mahnaz Asgharnejad Discusses Data on Soticlestat for LGS and Dravet Syndrome

Post author:Jessica Lynn
Post published:June 27, 2023
Post category:Dravet Syndrome Lennox-Gastaut syndrome

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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Rare Community Profiles: A Partnership Between CureDuchenne and PicnicHealth Bolsters the Power of CureDuchenne Link

Post author:Jessica Lynn
Post published:June 22, 2023
Post category:Duchenne Muscular Dystrophy

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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Rare Community Profiles: Shantel S. and Shriners Children’s are Transforming the Way We Understand Arthrogryposis Multiplex Congenita (AMC)

Post author:Jessica Lynn
Post published:June 20, 2023
Post category:Arthrogryposis Multiplex Congenita 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…

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Rare Community Profiles: Probably Genetic Offers No-Cost Genetic Testing for Rare Diseases: A Conversation with CEO Lukas Lange

Post author:Jessica Lynn
Post published:June 14, 2023
Post category:Rare Disease

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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Rare Community Profiles: How the Seena Magowitz Foundation is Working to Change the World for People Living with Pancreatic Cancer

Post author:Jessica Lynn
Post published:June 6, 2023
Post category:Pancreatic Cancer

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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Rare Community Profiles: The Cost of Preventive Care in Chronic Illness and Rare Disease—and Why We Need to Talk About It

Post author:Jessica Lynn
Post published:June 2, 2023
Post category:Rare Disease

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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Rare Community Profiles: Uplifting Athletes Harnesses the Power of Sport to Benefit the Rare Disease Community

Post author:Jessica Lynn
Post published:June 1, 2023
Post category:Rare Disease

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.com

Rare Community Profiles: From the Virtual Fun Run & Walk to Mental Health Support: How Jack Johnson of FSIG is Working to Improve the Lives of All People with Fabry Disease

Post author:Jessica Lynn
Post published:May 31, 2023
Post category:Fabry Disease

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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Rare Community Profiles: “The Boy in the Blue”: An MPS and Mental Health Awareness Project

Post author:Jessica Lynn
Post published:May 30, 2023
Post category:MPS VI (Maroteaux-Lamy syndrome)Mucopolysaccharidosis Rare Disease

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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Rare Community Profiles: From the 1960s to Now: How Two Hemophilia Advocates Have Seen Treatment and Research Progress

Post author:Jessica Lynn
Post published:May 17, 2023
Post category:Hemophilia Hemophilia A Hemophilia B

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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Rare Community Profiles: How Derrick’s Colorectal Cancer Journey Led Him to Advocate for Increased Biomarker Testing

Post author:Jessica Lynn
Post published:May 16, 2023
Post category:Colorectal cancer

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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Rare Community Profiles: This Rare Family is Managing CVID, MS, UC, and Double Cortex Syndrome: Here’s How You Can Help

Post author:Jessica Lynn
Post published:May 11, 2023
Post category:Common Variable Immune Deficiency Double cortex syndrome Multiple Sclerosis Timely ulcerative Colitis

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 families,…

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Rare Community Profiles: CureDuchenne Clinic in Greater Dallas Area Aims to Improve Treatment Accessibility and Care for Underserved Families with DMD and BMD

Post author:Jessica Lynn
Post published:May 10, 2023
Post category:Becker muscular dystrophy Duchenne Muscular Dystrophy

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.com

Rare Community Profiles: Dr. Jonathan Barratt Discusses Phase 2b Data on Atacicept for IgA Nephropathy

Post author:Jessica Lynn
Post published:May 9, 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…

source: shutterstock.com

Rare Community Profiles: The Importance of Advocacy: How Gaucher Disease Diagnoses Changed the Garay Family’s Trajectory

Post author:Jessica Lynn
Post published:May 4, 2023
Post category:Gaucher Disease

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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Rare Community Profiles: DTx Pharma is Developing Innovative RNA Therapeutics for CMT1A

Post author:Jessica Lynn
Post published:May 3, 2023
Post category:Charcot-Marie-Tooth disease

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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Rare Community Profiles: Singer-Songwriter Pidgie Uses Her SMA2 Experience to Advocate: “Music is Inclusion!”

Post author:Jessica Lynn
Post published:May 2, 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.com

Rare Community Profiles: Creating a Caregiver-Centric Social Platform: An Interview with Comend’s Albert Wang and Flawnson Tong

Post author:Jessica Lynn
Post published:April 27, 2023
Post category:Rare Disease

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

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

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

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

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

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

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

Rare Community Profiles: Mahnaz Asgharnejad Discusses Data on Soticlestat for LGS and Dravet Syndrome

Rare Community Profiles: A Partnership Between CureDuchenne and PicnicHealth Bolsters the Power of CureDuchenne Link

Rare Community Profiles: Shantel S. and Shriners Children’s are Transforming the Way We Understand Arthrogryposis Multiplex Congenita (AMC)

Rare Community Profiles: Probably Genetic Offers No-Cost Genetic Testing for Rare Diseases: A Conversation with CEO Lukas Lange

Rare Community Profiles: How the Seena Magowitz Foundation is Working to Change the World for People Living with Pancreatic Cancer

Rare Community Profiles: The Cost of Preventive Care in Chronic Illness and Rare Disease—and Why We Need to Talk About It

Rare Community Profiles: Uplifting Athletes Harnesses the Power of Sport to Benefit the Rare Disease Community

Rare Community Profiles: From the Virtual Fun Run & Walk to Mental Health Support: How Jack Johnson of FSIG is Working to Improve the Lives of All People with Fabry Disease

Rare Community Profiles: “The Boy in the Blue”: An MPS and Mental Health Awareness Project

Rare Community Profiles: From the 1960s to Now: How Two Hemophilia Advocates Have Seen Treatment and Research Progress

Rare Community Profiles: How Derrick’s Colorectal Cancer Journey Led Him to Advocate for Increased Biomarker Testing

Rare Community Profiles: This Rare Family is Managing CVID, MS, UC, and Double Cortex Syndrome: Here’s How You Can Help

Rare Community Profiles: CureDuchenne Clinic in Greater Dallas Area Aims to Improve Treatment Accessibility and Care for Underserved Families with DMD and BMD

Rare Community Profiles: Dr. Jonathan Barratt Discusses Phase 2b Data on Atacicept for IgA Nephropathy

Rare Community Profiles: The Importance of Advocacy: How Gaucher Disease Diagnoses Changed the Garay Family’s Trajectory

Rare Community Profiles: DTx Pharma is Developing Innovative RNA Therapeutics for CMT1A

Rare Community Profiles: Singer-Songwriter Pidgie Uses Her SMA2 Experience to Advocate: “Music is Inclusion!”

Rare Community Profiles: Creating a Caregiver-Centric Social Platform: An Interview with Comend’s Albert Wang and Flawnson Tong

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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