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Latest

  • 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
  • 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
  • “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
  • 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
  • My Laryngeal Cancer Journey – Ginger Ortiz
    Laryngeal Cancer

    My Laryngeal Cancer Journey – Ginger Ortiz

    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
  • “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
  • 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

Categories

Alzheimer’s. Aortic Stenosis.

AUTS2.

Barth Syndrome.

BPAN.

Breast Cancer.

Chronic Myeloid Leukemia.

CRPS.

Congenital Adrenal Hyperplasia. Darier’s Disease. Ehlers-Danlos Syndrome. Familial Adenomatous Polyposis. FCAS. Graves’ Disease. Guillain-Barre Syndrome. HADDS. Hemophilia. Huntington’s Disease. Keratoconus. Limb-Girdle Muscular Dystrophy. MELAS. Myofibrillar Myopathy type 13. MSMDS. Multiple Sulfatase Deficiency. Niemann-Pick Disease Type C. Ornithine Transcarbamylase Deficiency. Osteosarcoma. Ovarian Cancer. PDCD. PPA2 Deficiency. Prader-Willi Syndrome. PNES. Rare Disease. Short Bowel Syndrome. 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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