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.

    Rare Community Profiles: White Paper Discusses Access Barriers in IgG4-Related Disease (IgG4-RD)
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    Rare Community Profiles: White Paper Discusses Access Barriers in IgG4-Related Disease (IgG4-RD)

      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: White Paper Discusses Access Barriers in IgG4-Related Disease (IgG4-RD)
    ICYMI: Neuraxpharm and Minoryx’s Special Information Film Raises Leukodystrophy Awareness
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    ICYMI: Neuraxpharm and Minoryx’s Special Information Film Raises Leukodystrophy Awareness

    Rare Disease Day may be long past in February, but the fight for rare disease awareness continues. Earlier this year, specialty pharmaceutical company Neuraxpharm Group ("Neuraxpharm") and biotechnology company Minoryx…

    Continue Reading ICYMI: Neuraxpharm and Minoryx’s Special Information Film Raises Leukodystrophy Awareness
    Physicians Identify Poor Disease Management in Patients with IBD
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    Physicians Identify Poor Disease Management in Patients with IBD

    Effective disease management in inflammatory bowel disease (IBD), which encompasses Crohn’s disease and ulcerative colitis, is incredibly important. Managing your condition helps you maintain a better quality-of-life, reduces uncomfortable or…

    Continue Reading Physicians Identify Poor Disease Management in Patients with IBD
    First Patient Enrolled in VE303 Study for Recurrent C. Diff
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    First Patient Enrolled in VE303 Study for Recurrent C. Diff

    An estimated 25% of people with Clostridioides difficile (C. diff) infections experience recurrence following successful antibiotic intervention. After three or more recurrent infections, the risk of developing another infection sits…

    Continue Reading First Patient Enrolled in VE303 Study for Recurrent C. Diff
    AGMB-447 Nabs Orphan Drug Designation as Potential IPF Treatment
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    AGMB-447 Nabs Orphan Drug Designation as Potential IPF Treatment

    People with idiopathic pulmonary fibrosis (IPF) already have two FDA-approved treatment options: Ofev (nintedanib) and Esbriet (pirfenidone). But biotech company Agomab Therapeutics ("Agomab") is working to introduce another potential therapeutic…

    Continue Reading AGMB-447 Nabs Orphan Drug Designation as Potential IPF Treatment

    UC Davis Health Researchers Identify Biomarkers for Schizophrenia in 22q11.2 Deletion Syndrome

    A 2008 report published in Current Psychiatry Reports found that approximately 1% of people with schizophrenia also have a rare genetic disorder called 22q11.2 deletion syndrome. This suggests that schizophrenia…

    Continue Reading UC Davis Health Researchers Identify Biomarkers for Schizophrenia in 22q11.2 Deletion Syndrome
    “An Event to End NF” Helped Teen Raise Funds, Awareness for Neurofibromatosis
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    “An Event to End NF” Helped Teen Raise Funds, Awareness for Neurofibromatosis

    On May 17, 2024, Ohio was graced with a unique, Wizard of Oz-themed fundraising event called "An Event to End NF." NF, in this case, stands for neurofibromatosis, a rare genetic…

    Continue Reading “An Event to End NF” Helped Teen Raise Funds, Awareness for Neurofibromatosis
    Phase 3 Results: Imsidolimab Provides Positive Outlook in Generalized Pustular Psoriasis (GPP)
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    Phase 3 Results: Imsidolimab Provides Positive Outlook in Generalized Pustular Psoriasis (GPP)

    Just about one month ago, clinical-stage biotechnology company AnaptysBio announced the availability of positive top-line results from two Phase 3 clinical studies: GEMINI-1 and GEMINI-2. Both studies sought to assess…

    Continue Reading Phase 3 Results: Imsidolimab Provides Positive Outlook in Generalized Pustular Psoriasis (GPP)
    Women More Likely to Develop De Novo Conditions Within One Year of Cushing Syndrome Remission
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    Women More Likely to Develop De Novo Conditions Within One Year of Cushing Syndrome Remission

    Researchers recently linked Cushing syndrome remission to the development of de novo (first occurrence) diseases, including autoimmune diseases, in various patients. But how did they reach this point? The first…

    Continue Reading Women More Likely to Develop De Novo Conditions Within One Year of Cushing Syndrome Remission

    ICYMI: Make HStory Platform Offers Hidradenitis Suppurativa Education and Community Support

    The importance of physician education and community support in healthcare cannot be understated. Well-educated physicians are better equipped to diagnose, treat, and manage a range of medical conditions to ensure…

    Continue Reading ICYMI: Make HStory Platform Offers Hidradenitis Suppurativa Education and Community Support
    Rare Community Profiles: #RAREis: Increasing Medical Access and Equity for the Hispanic Community through The Akari Foundation’s Initiatives
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    Rare Community Profiles: #RAREis: Increasing Medical Access and Equity for the Hispanic Community through The Akari Foundation’s Initiatives

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

    AbbVie Releases Positive Topline Results from Upadacitinib Study for Giant Cell Arteritis

    RINVOQ (upadacitinib) is a Janus Kinase inhibitor that is currently approved to treat a variety of conditions: moderate to severe atopic dermatitis, active psoriatis arthritis, moderate to severe rheumatoid arthritis,…

    Continue Reading AbbVie Releases Positive Topline Results from Upadacitinib Study for Giant Cell Arteritis
    Rare Community Profiles: How Her Daughter’s MCTD Led Ronda to Help Families Navigate Rare Disease Diagnoses
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    Rare Community Profiles: How Her Daughter’s MCTD Led Ronda to Help Families Navigate Rare Disease Diagnoses

      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 Her Daughter’s MCTD Led Ronda to Help Families Navigate Rare Disease Diagnoses
    Investigational New Drug (IND) Application Accepted for EB-105 to Treat Diabetic Macular Edema
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    Investigational New Drug (IND) Application Accepted for EB-105 to Treat Diabetic Macular Edema

    An Investigational New Drug (IND) application is a crucial part of the drug development process. INDs are requests submitted to the U.S. Food and Drug Administration (FDA) that authorize the…

    Continue Reading Investigational New Drug (IND) Application Accepted for EB-105 to Treat Diabetic Macular Edema
    Rare Community Profiles: #RAREis: Advancing Clinical Trial and Patient Equity with the Foundation for Sarcoidosis Research’s Mary McGowan
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    Rare Community Profiles: #RAREis: Advancing Clinical Trial and Patient Equity with the Foundation for Sarcoidosis Research’s Mary McGowan

      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
    Transfusions with Contaminated Blood Mean 1750 People in the UK Have Undiagnosed Hepatitis C
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    Transfusions with Contaminated Blood Mean 1750 People in the UK Have Undiagnosed Hepatitis C

    Blood transfusions are a vital medical procedure used to address a multitude of health conditions and emergencies, such as severe anemia, sepsis, trauma, internal bleeding, hemophilia, sickle cell disease, thalassemia,…

    Continue Reading Transfusions with Contaminated Blood Mean 1750 People in the UK Have Undiagnosed Hepatitis C
    ASO Therapy Improves Cellular Function in Timothy Syndrome Brain Organoids
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    ASO Therapy Improves Cellular Function in Timothy Syndrome Brain Organoids

    Have you heard of antisense oligonucleotides (ASOs)? These short, synthetic strands of nucleic acids are designed to bind specifically to the mRNA transcripts of genes, blocking the production of disease-causing…

    Continue Reading ASO Therapy Improves Cellular Function in Timothy Syndrome Brain Organoids