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.

    CureDuchenne Launches the CureDuchenne Caregiver Course to Support Caregivers of People with DMD

      Since its founding 20 years ago, CureDuchenne has been tirelessly working to find and fund a cure for Duchenne muscular dystrophy (DMD). They have done this through supporting families,…

    Continue Reading CureDuchenne Launches the CureDuchenne Caregiver Course to Support Caregivers of People with DMD
    Rare Community Profiles: Inozyme’s Catherine Nester Discusses Newborn Screening and the GACI Diagnostic Delay
    Fotocitizen / Pixabay

    Rare Community Profiles: Inozyme’s Catherine Nester Discusses Newborn Screening and the GACI Diagnostic Delay

    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…

    Continue Reading Rare Community Profiles: Inozyme’s Catherine Nester Discusses Newborn Screening and the GACI Diagnostic Delay
    A Colon Cancer Diagnosis During Pregnancy Led This Mother to Learn She Had Li-Fraumeni Syndrome
    Free-Photos / Pixabay

    A Colon Cancer Diagnosis During Pregnancy Led This Mother to Learn She Had Li-Fraumeni Syndrome

    For the first two months of her pregnancy, Kristine Koser felt pretty good. Koser and her husband, Andrew, couldn't wait to welcome their daughter Aubrey into the world. Everything seemed…

    Continue Reading A Colon Cancer Diagnosis During Pregnancy Led This Mother to Learn She Had Li-Fraumeni Syndrome
    Rare Community Profiles: Strong Like a Mother: How Judy Has Remained Steadfast Through Her IgAN Journey
    Fotocitizen / Pixabay

    Rare Community Profiles: Strong Like a Mother: How Judy Has Remained Steadfast Through Her IgAN Journey

    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…

    Continue Reading Rare Community Profiles: Strong Like a Mother: How Judy Has Remained Steadfast Through Her IgAN Journey
    September 24 is FH Awareness Day!
    Xanthoma is an easy sign of high cholesterol conditions like HeFH. If you see this, please go to the doctor immediately! Source: Wikipedia

    September 24 is FH Awareness Day!

    An estimated 1.3 million people across the United States, and 30 million people globally, live with familial hypercholesterolemia (FH). This rare inherited form of high low-density lipoprotein (LDL) cholesterol remains…

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    Researchers Track Gene Therapy’s Impact on Neural Connections in Hurler Syndrome
    source: shutterstock.com

    Researchers Track Gene Therapy’s Impact on Neural Connections in Hurler Syndrome

    617 words (source - 3% match) vs. 452 words (mine - 4% match) As our healthcare field continues to innovate and grow, we have seen more conversations regarding gene therapy…

    Continue Reading Researchers Track Gene Therapy’s Impact on Neural Connections in Hurler Syndrome
    Rare Community Profiles: From Afraid to Advocate: How Natalie Found Her Power After a Friedreich’s Ataxia Diagnosis
    Fotocitizen / Pixabay

    Rare Community Profiles: From Afraid to Advocate: How Natalie Found Her Power After a Friedreich’s Ataxia Diagnosis

    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…

    Continue Reading Rare Community Profiles: From Afraid to Advocate: How Natalie Found Her Power After a Friedreich’s Ataxia Diagnosis
    Rare Community Profiles: Understanding MAC Lung Disease, Bronchiectasis, and PAH: A Discussion with Dr. Martina Flammer
    source: pixabay.com

    Rare Community Profiles: Understanding MAC Lung Disease, Bronchiectasis, and PAH: A Discussion with Dr. Martina Flammer

    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…

    Continue Reading Rare Community Profiles: Understanding MAC Lung Disease, Bronchiectasis, and PAH: A Discussion with Dr. Martina Flammer