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Rare Community Profiles: #RAREis: Increasing Medical Access and Equity for the Hispanic Community through The Akari Foundation’s Initiatives

• Post author:Jessica Lynn
• Post published:June 6, 2024
• Post category:Duchenne Muscular Dystrophy

  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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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.…

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

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NORD State Report Card: Each State Graded on Rare Disease Care Access

• Post author:Jessica Lynn
• Post published:March 21, 2024
• Post category:Rare Disease

Since 2015, the National Organization for Rare Disorders (NORD) has released an annual State Report Card that highlights state policies which could affect how people with rare diseases access care.…

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Black Women with Endometriosis or Fibroids Have a Higher Ovarian Cancer Risk

• Post author:Jessica Lynn
• Post published:November 24, 2023
• Post category:Endometriosis/Fibroids/Ovarian Cancer

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

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Informing Treatment Decisions for Psoriatic Arthritis: A Discussion with Dr. Soumya Chakravarty

• Post author:Jessica Lynn
• Post published:January 25, 2023
• Post category:Psoriatic Arthritis

From November 10-14, 2022, various stakeholders within the rheumatology sphere connected at the American College of Rheumatology’s (ACR) Convergence 2022. During ACR Convergence, described as the world’s premier rheumatology experience,…

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Health Inequities in the Treatment of Pediatric Lupus

• Post author:Jessica Lynn
• Post published:April 27, 2022
• Post category:Lupus

Unfortunately, there are a number of racial and ethnic disparities in healthcare which position certain groups for poorer outcomes. For example, Black individuals often have lesser access to adequate medical…

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