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  • Rareatives Announces Supporting Partnership with the World Orphan Drug Congress USA 2026
    rare disease

    Rareatives Announces Supporting Partnership with the World Orphan Drug Congress USA 2026

    Join the World Orphan Drug Congress USA 2026! Connect with leaders, regulators, and patient advocates to advance rare disease therapies, clinical trials, and patient access strategies from June 9–11, 2026 in Boston.

    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
  • “Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
    spinal muscular atrophy

    “Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy

    Jessica Lynn
  • SURVEY: The Rare Disease Diagnostic Odyssey
    rare disease

    SURVEY: The Rare Disease Diagnostic Odyssey

    Jessica Lynn
  • My Immune System Attacks My Liver — and Nobody Knows Why: Katherine’s Autoimmune Hepatitis Story
    Autoimmune Hepatitis

    My Immune System Attacks My Liver — and Nobody Knows Why: Katherine’s Autoimmune Hepatitis Story

    Jessica Lynn

Trending

  • “Think Rare and Act Fast”: A South Dakota Family’s Mission After Losing Their Son Pruitt to OTC Deficiency
    Ornithine Transcarbamylase Deficiency, Urea Cycle Disorders

    “Think Rare and Act Fast”: A South Dakota Family’s Mission After Losing Their Son Pruitt to OTC Deficiency

    Jessica Lynn
  • “Spinal Muscular Atrophy Is Not Our Whole Story”: How One Family Navigated Two SMA Diagnoses and Found Hope
    spinal muscular atrophy

    “Spinal Muscular Atrophy Is Not Our Whole Story”: How One Family Navigated Two SMA Diagnoses and Found Hope

    Jessica Lynn
  • “Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
    spinal muscular atrophy

    “Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy

    Jessica Lynn
  • “Exactly Who She’s Meant to Be”: One Mom is Flipping the Script on How People Think About Prader-Willi Syndrome
    Prader-Willi Syndrome

    “Exactly Who She’s Meant to Be”: One Mom is Flipping the Script on How People Think About Prader-Willi Syndrome

    Jessica Lynn
  • “Don’t Wait”: One Musician’s Advice as He Navigates Thyroid Eye Disease For the Second Time
    Graves’ disease, Thyroid Eye Disease

    “Don’t Wait”: One Musician’s Advice as He Navigates Thyroid Eye Disease For the Second Time

    Jessica Lynn
  • ​​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

    Jessica Lynn
  • 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

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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