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.

    ICYMI: EDSIVO for vEDS Earns Breakthrough Therapy Designation
    stevepb / Pixabay

    ICYMI: EDSIVO for vEDS Earns Breakthrough Therapy Designation

    In the United States, the FDA grants Breakthrough Therapy designation to drugs intended to treat serious and life-threatening illnesses, and/or drugs which show significant improvement over available therapies. After receiving…

    Continue Reading ICYMI: EDSIVO for vEDS Earns Breakthrough Therapy Designation
    How Malaria Impacts Your Immune System
    https://pixabay.com/en/mosquito-bug-nature-insect-macro-1652561/

    How Malaria Impacts Your Immune System

    How does our body fight infections? After we get infected with a serious illness, in what ways does our immune system prepare? Understanding these processes could help hone treatments and…

    Continue Reading How Malaria Impacts Your Immune System
    Adolescents with JIA Have Longer Rheumatology Wait Times
    Source: https://pixabay.com/en/boy-man-sitting-thinking-waiting-1149957/

    Adolescents with JIA Have Longer Rheumatology Wait Times

    Adolescence is the phase which exists between childhood and adulthood; therefore, people who are between ages 10-19 are typically considered to be adolescents. How does adolescence change the way people…

    Continue Reading Adolescents with JIA Have Longer Rheumatology Wait Times
    FDA Lifts Clinical Hold on LB-001 IND for Methylmalonic Acidemia
    Source: pixabay.com

    FDA Lifts Clinical Hold on LB-001 IND for Methylmalonic Acidemia

    During the Phase 1/2 SUNRISE clinical trial, which evaluated LB-001 for pediatric patients with methylmalonic acidemia, at least two participants experienced serious and severe adverse reactions: thrombotic microangiopathy. While investigating…

    Continue Reading FDA Lifts Clinical Hold on LB-001 IND for Methylmalonic Acidemia
    FDA Approved: Cuvrior for Wilson Disease
    https://unsplash.com/photos/_jbClosDsD4

    FDA Approved: Cuvrior for Wilson Disease

    For the last 52 years, individuals with Wilson disease have been relying, largely, on the same treatment options. These options, designed to remove copper from the body, include Cuprimine (penicillamine).…

    Continue Reading FDA Approved: Cuvrior for Wilson Disease
    Accelerating the Journey to Rare Disease Treatment: An Interview with Katheron Intson of Varient (Pt. II)
    Katheron Intson

    Accelerating the Journey to Rare Disease Treatment: An Interview with Katheron Intson of Varient (Pt. II)

    Don't forget to check out Part 1 of our interview with Katheron Intson, where we discussed her background, her research experience in GRIN1, and the reasons behind why she developed…

    Continue Reading Accelerating the Journey to Rare Disease Treatment: An Interview with Katheron Intson of Varient (Pt. II)