Skip to content
  • Instagram
  • X
Rareatives

Rareatives

    • About
    • Blog
    • Contact
    • Resources

Latest

  • This Mother Has Fought for Three Years to Find Answers for Her Undiagnosed Son – Can You Help?
    Undiagnosed

    This Mother Has Fought for Three Years to Find Answers for Her Undiagnosed Son – Can You Help?

    Daniel’s family has not stopped looking for answers or for a diagnosis. Sharing this with the broader community can hopefully connect them with someone who can help.

    Jessica Lynn
  • Never Knowing When: Life With Cerebral Cavernous Malformation, and the Patient-Driven Search for a Cure 
    Cavernoma, Cavernous Malformation, Cerebral Cavernous Malformation

    Never Knowing When: Life With Cerebral Cavernous Malformation, and the Patient-Driven Search for a Cure 

    Davi Jacobs
  • One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)
    Microvillus Inclusion Disease

    One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)

    Jessica Lynn
  • This Beautiful Liphe: How Marjorie and Ronan are Raising PKU Awareness
    Phenylketonuria

    This Beautiful Liphe: How Marjorie and Ronan are Raising PKU Awareness

    Jessica Lynn
  • CAMP4 Therapeutics’ CMO Yuri Maricich Describes Push to Deliver the First SYNGAP1 Treatment
    SYNGAP1

    CAMP4 Therapeutics’ CMO Yuri Maricich Describes Push to Deliver the First SYNGAP1 Treatment

    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
  • This Beautiful Liphe: How Marjorie and Ronan are Raising PKU Awareness
    Phenylketonuria

    This Beautiful Liphe: How Marjorie and Ronan are Raising PKU Awareness

    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

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?

Subscribe and get the latest news to your mailbox.

  • Instagram
  • Twitter
    • About
    • Blog
    • Contact
    • Resources
Loading Comments...