Rare Genes Movement, Author at 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 MovementJuly 17, 2026

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 MovementJuly 17, 2026

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 MovementJuly 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.

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 MovementJuly 14, 2026

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 MovementJune 5, 2026

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 Movement

Research, 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 MovementMay 7, 2026

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 MovementMay 7, 2026

Rare Genes Movement

Why Rare Disease Research Matters: Pushing the Frontiers of Medicine

Science Is Learning More About Rare Childhood Lung Diseases

Rare Disease Is More Than a Medical Diagnosis

Rare Disease Impacts More Than Health

When the IEP Misses the Point | Rare Genes Movement

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

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

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Rare Genes Movement

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About Rare Genes Movement

Featured posts

Children have rare genes have dreams too.

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SOCIAL

rare genes movement