Americans with Disabilities Act

California Children’s Services

Genetic Alliance

Global Genes

Hope Knows No Boundaries

Individuals with Disabilities Education Act

In-Home Supportive Services (IHSS) Program
contact information depends on residence in the state of California

Sanford Burnham CORDS

The Cerebral Palsy Foundation

The Epilepsy Foundation

United Mitochondrial Disease Foundation

Rare Genomics Institute

National Organization for Rare Disorders (NORD)

Rare Disease Network

Rare Disease Report

Rare Undiagnosed

Rare Disease United Foundation

NIH / National Center Advancing Translational Sciences

Dystonia Coalition

Unique Chromosome Network

Wrights Law


Child Neurology Foundation

Respite Care Notebook

    The perfect tool for children and adults to start the discussion about Rare Disease. Written by a Rare Disease patient and her mom, you can use the puzzles, word search, and even the wheat/corn/soy/dairy free cookie recipe, to learn about how some students accommodate in school. 

     Teachers can use them in classrooms, students can take them home to share with parents and siblings, and students can share with friends.  


     We Are All Rare Activity Books are available for purchase HERE. Proceeds from the books go to