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Latest

  • ​​Always Forge Ahead with a Purpose: Navy Veteran Dan “Dry Dock” Shockley Turns a Rare Disease Diagnosis into a Mission to Educate Others
    Attenuated Familial Adenomatous Polyposis, Schwannomatosis

    ​​Always Forge Ahead with a Purpose: Navy Veteran Dan “Dry Dock” Shockley Turns a Rare Disease Diagnosis into a Mission to Educate Others

    Dan “Dry Dock” Shockley doesn’t let his AFAP diagnosis stop him. Instead, he advocates for preventive care and early detection, aiming to destigmatize care and inspire others to prioritize health.

    Jessica Lynn
  • AI-Driven Patient Detection Surfaces Approximately 1,200 Likely-Undiagnosed GEP-NET Patients in UK Primary Care
    Gastroenteropancreatic Neuroendocrine Tumor

    AI-Driven Patient Detection Surfaces Approximately 1,200 Likely-Undiagnosed GEP-NET Patients in UK Primary Care

    Jessica Lynn
  • Machine Learning Maps and Discovers Clinical Endpoints in Pompe Disease Using Real-World Data
    Pompe Disease

    Machine Learning Maps and Discovers Clinical Endpoints in Pompe Disease Using Real-World Data

    Jessica Lynn
  • Tisento Therapeutics’ Chad Glasser Discusses PRIZM Trial, Zagociguat Development for MELAS
    MELAS

    Tisento Therapeutics’ Chad Glasser Discusses PRIZM Trial, Zagociguat Development for MELAS

    Jessica Lynn
  • Multiple Conditions and a Mission to Stop the Stigma: Sammy’s Story
    dissociative identity disorder, gastroparesis, pseudopseudohypoparathyroidism, Psychogenic Non-Epileptic Seizures

    Multiple Conditions and a Mission to Stop the Stigma: Sammy’s Story

    Jessica Lynn

Trending

  • When Doctors Stop Listening: The Challenges of Living with Multiple Rare Conditions
    chronic myeloid leukemia, Huntington’s disease, Paroxysmal Nocturnal Hemoglobinuria

    When Doctors Stop Listening: The Challenges of Living with Multiple Rare Conditions

    Jessica Lynn
  • What It’s Like to Raise a Daughter with Maple Syrup Urine Disease in the Philippines
    Maple Syrup Urine Disease

    What It’s Like to Raise a Daughter with Maple Syrup Urine Disease in the Philippines

    Jessica Lynn
  • Tisento Therapeutics’ Chad Glasser Discusses PRIZM Trial, Zagociguat Development for MELAS
    MELAS

    Tisento Therapeutics’ Chad Glasser Discusses PRIZM Trial, Zagociguat Development for MELAS

    Jessica Lynn
  • Tisento Therapeutics’ Patient-Informed Phase 2 Trial is Advancing MELAS Research
    MELAS, mitochondrial disease

    Tisento Therapeutics’ Patient-Informed Phase 2 Trial is Advancing MELAS Research

    Jessica Lynn
  • This Mother-Son Duo Helped Change the Treatment Landscape for Classic Congenital Adrenal Hyperplasia
    Congenital Adrenal Hyperplasia

    This Mother-Son Duo Helped Change the Treatment Landscape for Classic Congenital Adrenal Hyperplasia

    Jessica Lynn
  • The Zebra & The Bear: How One Mother’s Tireless Efforts to Save Her Daughter from MSD Helped Advance Gene Therapy
    Multiple Sulfatase Deficiency

    The Zebra & The Bear: How One Mother’s Tireless Efforts to Save Her Daughter from MSD Helped Advance Gene Therapy

    Jessica Lynn
  • The Voice She Couldn’t Find: A Speech Pathologist’s Journey Facing a Rare Variant of Guillain-Barré Syndrome
    Guillain-Barré Syndrome

    The Voice She Couldn’t Find: A Speech Pathologist’s Journey Facing a Rare Variant of Guillain-Barré Syndrome

    Jessica Lynn
  • The New Reality of Rare Disease Treatment: How an FDA-Approved Medicine for NPC Helped Change Connor’s Life
    Niemann-Pick Disease type C

    The New Reality of Rare Disease Treatment: How an FDA-Approved Medicine for NPC Helped Change Connor’s Life

    Jessica Lynn

Categories

  • Alzheimer’s Disease
  • Aortic Stenosis
  • Attenuated Familial Adenomatous Polyposis
  • Autoimmune Hepatitis
  • AUTS2
  • Barth Syndrome
  • Beta-Propeller Protein-Associated Neurodegeneration (BPAN)
  • Breast Cancer
  • Chronic Myeloid Leukemia
  • Chronic Regional Pain Syndrome (CRPS)
  • Colorectal Cancer
  • Congenital Adrenal Hyperplasia (CAH)
  • Darier’s Disease
  • Ehlers-Danlos Syndrome
  • Familial Adenomatous Polyposis
  • Familial Cold Autoinflammatory Syndrome (FCAS)
  • Gastroparesis
  • Graves’ Disease
  • Guillain-Barré syndrome
  • HADDS
  • Hemophilia
  • Huntington’s Disease
  • Keratoconus
  • Limb-Girdle Muscular Dystrophy
  • Maple Syrup Urine Disease
  • MELAS
  • Myofibrillar Myopathy Type 13
  • MSMDS
  • Multiple Sulfatase Deficiency
  • Niemann-Pick Disease Type C
  • Ornithine Transcarbamylase Deficiency
  • Osteosarcoma
  • Ovarian Cancer
  • Pyruvate Dehydrogenase Complex Deficiency (PDCD)
  • PPA2 Deficiency
  • Prader-Willi Syndrome
  • Psychogenic Non-Epileptic Seizures (PNES)
  • Rare Disease
  • Short Bowel Syndrome
  • Spinal Muscular Atrophy
  • Stiff Person Syndrome
  • Thygeson’s Disease
  • Thyroid Eye Disease
  • Twin Anemia Polycythemia Sequence
  • XLID98

Rareatives is a patient-led publication where the unique stories of the rare disease community become headline news. We’re flipping the script on rare diseases. Not just awareness — action. Your story could spark the next big change. Ready to rewrite the narrative?

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