Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

    WHAT THE C@H?!: How This Educational Initiative Supports the Congenital Adrenal Hyperplasia (CAH) Community
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    WHAT THE C@H?!: How This Educational Initiative Supports the Congenital Adrenal Hyperplasia (CAH) Community

    For over three decades, Neurocrine Biosciences, Inc. has been working to support individuals with neurological, neuroendocrine and neuropsychiatric disorders through the development of breakthrough treatment options. One of the company’s…

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    Rare Community Profiles: How Two Participants Found Connection and Support at the Marfan Foundation’s 2024 Global Virtual Conference
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    Rare Community Profiles: How Two Participants Found Connection and Support at the Marfan Foundation’s 2024 Global Virtual Conference

      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: How Two Participants Found Connection and Support at the Marfan Foundation’s 2024 Global Virtual Conference
    Rare Community Profiles: He’s Only “1 of 20,” But Jonathan Cappiello’s Impact Extends Much Further
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    Rare Community Profiles: He’s Only “1 of 20,” But Jonathan Cappiello’s Impact Extends Much Further

    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. Jonathan…

    Continue Reading Rare Community Profiles: He’s Only “1 of 20,” But Jonathan Cappiello’s Impact Extends Much Further
    Why Dr. Fiorentino Believes in a Promising Treatment Future for Dermatomyositis
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    Why Dr. Fiorentino Believes in a Promising Treatment Future for Dermatomyositis

    In some cases, dermatomyositis can be difficult to treat. A variety of treatment options are available, from corticosteroids and immunosuppressants to antimalarials, colchicine, alendronate, and warfarin. But this rare condition…

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    RNU4-2 Variants Cause Up to 0.4% of Neurodevelopmental Disorders
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    RNU4-2 Variants Cause Up to 0.4% of Neurodevelopmental Disorders

    In unedited, early-access research published in Nature, a team of researchers explain that an estimated 60% of people with neurodevelopmental disorders remain undiagnosed, despite comprehensive genetic testing options. In many cases, this is…

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    Enrollment Complete for Phase 3 Study Evaluating aPAP Treatment Molgramostim
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    Enrollment Complete for Phase 3 Study Evaluating aPAP Treatment Molgramostim

    Clinical-stage biopharmaceutical company Savara Inc. was founded on a desire to develop innovative therapies for people living with rare respiratory diseases. The company's work over the past few years centers…

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    Rare Community Profiles: Volv’s Innovative Approach Harnesses the Power of AI for Rare Disease Detection
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    Rare Community Profiles: Volv’s Innovative Approach Harnesses the Power of AI for Rare Disease Detection

      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: Volv’s Innovative Approach Harnesses the Power of AI for Rare Disease Detection
    SLEEP 2024: Presented Data Highlighted Possible Benefits of ALKS 2680 for Narcolepsy Type 1
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    SLEEP 2024: Presented Data Highlighted Possible Benefits of ALKS 2680 for Narcolepsy Type 1

    The American Academy of Sleep Medicine and the Sleep Research Society held the 38th annual SLEEP meeting in early June 2024. The meeting allows stakeholders across the sleep sphere to…

    Continue Reading SLEEP 2024: Presented Data Highlighted Possible Benefits of ALKS 2680 for Narcolepsy Type 1
    Rare Community Profiles: Astellas Pharma’s Dr. Anthony Yanni Discusses the Success of the First-Ever Patient Advocacy Organization Action Week (PAOAW)
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    Rare Community Profiles: Astellas Pharma’s Dr. Anthony Yanni Discusses the Success of the First-Ever Patient Advocacy Organization Action Week (PAOAW)

      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: Astellas Pharma’s Dr. Anthony Yanni Discusses the Success of the First-Ever Patient Advocacy Organization Action Week (PAOAW)
    Long-Term Safety and Efficacy Data Available on Vabysmo for Diabetic Macular Edema
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    Long-Term Safety and Efficacy Data Available on Vabysmo for Diabetic Macular Edema

    Since its development and approval, Vabysmo has been a game-changer in the ophthalmologic space. The injectable VEGF and Ang-2 inhibitor treats diabetic macular edema (DME), macular edema with retinal vein…

    Continue Reading Long-Term Safety and Efficacy Data Available on Vabysmo for Diabetic Macular Edema
    SLEEP 2024: Two Studies Explore Link Between Narcolepsy and Cardiovascular Disease Risk
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    SLEEP 2024: Two Studies Explore Link Between Narcolepsy and Cardiovascular Disease Risk

    The SLEEP 2024 Annual Meeting took place this year from June 1 to June 5 in Houston, TX. During the course of this premier sleep conference, stakeholders across the sleep…

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    Rare Community Profiles: The Third Elephant on the Ramp to the Ark: How Carl’s Advocacy Affected His iMCD Journey
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    Rare Community Profiles: The Third Elephant on the Ramp to the Ark: How Carl’s Advocacy Affected His iMCD Journey

      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: The Third Elephant on the Ramp to the Ark: How Carl’s Advocacy Affected His iMCD Journey
    Rare Community Profiles: Superhero Liam Battles KAND with the Help of Shriners Children’s
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    Rare Community Profiles: Superhero Liam Battles KAND with the Help of Shriners Children’s

      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: Superhero Liam Battles KAND with the Help of Shriners Children’s
    STUDY: 33% of Adults with Severe Autoimmune Hemolytic Anemia Responded Well to Add-On IVIG
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    STUDY: 33% of Adults with Severe Autoimmune Hemolytic Anemia Responded Well to Add-On IVIG

    Prednisone, oral steroids, intravenous hydrocortisone, and even blood transfusions are used to treat autoimmune hemolytic anemia (AIHA). AIHA comprises of warm AIHA, mixed AIHA, or cold agglutinin disease (CAD). Some…

    Continue Reading STUDY: 33% of Adults with Severe Autoimmune Hemolytic Anemia Responded Well to Add-On IVIG