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    Why Rare Disease Research Matters: Pushing the Frontiers of Medicine A child's hand reaching toward a glowing DNA helix at sunrise… featured image for the Research Explained post on why rare disease research matters, by Rare Genes Movement.Research, Explained

    Why Rare Disease Research Matters: Pushing the Frontiers of Medicine

    Rare diseases affect 400 million people worldwide, yet nearly 95% still have no approved treatment.…
    Rare Genes Movement
    Rare Genes MovementJuly 17, 2026
    Science Is Learning More About Rare Childhood Lung Diseases A clay-style scientist studies a glowing pair of lungs beside a microscope… featured image for the Research Explained post on rare childhood lung disease and the new tools helping scientists understand it.Research, Explained

    Science Is Learning More About Rare Childhood Lung Diseases

    Rare childhood lung disease is hard to study for the same reason it is hard…
    Rare Genes Movement
    Rare Genes MovementJuly 17, 2026
    Rare Disease Is More Than a Medical Diagnosis A clay-style family sits together on a couch in warm lamplight with a medical folder set aside… featured image for the Research Explained post on rare disease mental health and the impact a diagnosis has on the whole family.Research, Explained

    Rare Disease Is More Than a Medical Diagnosis

    After a rare diagnosis, almost every conversation is medical. But research shows the hardest parts…
    Rare Genes Movement
    Rare Genes MovementJuly 17, 2026
    Rare Disease Impacts More Than Health A clay-style father holding a briefcase stands at a fork in the path holding his young son's hand at sunrise… featured image for the Research Explained post on rare disease quality of life and the 70 percent of caregivers who reduce their careers.Research, Explained

    Rare Disease Impacts More Than Health

    Roughly 70 percent of patients and caregivers cut back their professional lives because of rare…
    Rare Genes Movement
    Rare Genes MovementJuly 14, 2026
    When the IEP Misses the Point | Rare Genes Movement A clay-style illustrated scene of a parent presenting papers at an IEP meeting with a school official while a child plays nearby with blocks. Text reads: When the IEP Misses the Point — A Practical Guide for Rare Disease Families. Rare Genes Movement.For Families

    When the IEP Misses the Point | Rare Genes Movement

    A practical guide for rare disease families navigating IEPs… because your child deserves more than…
    Rare Genes Movement
    Rare Genes MovementJune 5, 2026
    Why It Took So Long to Get a Diagnosis — And How Genomic Testing Is Changing That A clay-style 3D illustration of a doctor presenting a glowing DNA strand with family portraits connected to it… featured image for the Research Explained post "Why It Took So Long to Get a Diagnosis" by Rare Genes MovementResearch, Explained

    Why It Took So Long to Get a Diagnosis — And How Genomic Testing Is Changing That

    A peer-reviewed study found that parents of children with rare genetic conditions often identified the…
    Rare Genes Movement
    Rare Genes MovementMay 7, 2026
    When Parents Know First. What a Peer-Reviewed Study Revealed About Rare Disease Families. A clay-style illustrated scene of a mother sitting across from a female doctor at a clinic desk, leaning forward with a notebook in hand as if presenting her research. A glowing DNA helix floats in the background. Text overlay reads: "When Parents Know First — What a Peer-Reviewed Study Revealed About Rare Disease Families." Research, Explained blog series by Rare Genes Movement.Research, Explained

    When Parents Know First. What a Peer-Reviewed Study Revealed About Rare Disease Families.

    A peer-reviewed study found that parents of children with rare genetic conditions often identified the…
    Rare Genes Movement
    Rare Genes MovementMay 7, 2026

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    About Rare Genes Movement

    We're a community-led movement helping rare disease families navigate the diagnostic odyssey, access research, and be heard. Learn more about us →

    Featured posts

    • A child's hand reaching toward a glowing DNA helix at sunrise… featured image for the Research Explained post on why rare disease research matters, by Rare Genes Movement.
      Why Rare Disease Research Matters: Pushing the Frontiers of MedicineJuly 17, 2026
    • A clay-style scientist studies a glowing pair of lungs beside a microscope… featured image for the Research Explained post on rare childhood lung disease and the new tools helping scientists understand it.
      Science Is Learning More About Rare Childhood Lung DiseasesJuly 17, 2026
    • A clay-style family sits together on a couch in warm lamplight with a medical folder set aside… featured image for the Research Explained post on rare disease mental health and the impact a diagnosis has on the whole family.
      Rare Disease Is More Than a Medical DiagnosisJuly 17, 2026
    • A clay-style father holding a briefcase stands at a fork in the path holding his young son's hand at sunrise… featured image for the Research Explained post on rare disease quality of life and the 70 percent of caregivers who reduce their careers.
      Rare Disease Impacts More Than HealthJuly 14, 2026

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    Rare Genes Movement is a 501(c)(3) nonprofit organization. Contributions are tax-deductible to the fullest extent permitted by law.

    EIN: 84-4654027

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