Blog - 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 MovementMay 20, 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