Americans with Disabilities Act
www.ada.gov

California Children’s Services
www.dhcs.ca.gov


Genetic Alliance
www.geneticalliance.org

Global Genes
www.globalgenes.org

Hope Knows No Boundaries
www.hopeknowsnoboundaries.org

Individuals with Disabilities Education Act
www.idea.ed.gov

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

Sanford Burnham CORDS
www.sanfordresearch.org/cords

The Cerebral Palsy Foundation
www.yourcpf.org

The Epilepsy Foundation
www.epilepsy.com

United Mitochondrial Disease Foundation
www.umdf.org

Rare Genomics Institute
www.raregenomics.org

National Organization for Rare Disorders (NORD)
www.rarediseases.org

Rare Disease Network
www.rarediseasesnetwork.org

Rare Disease Report
www.raredr.com

Rare Undiagnosed
www.rareundiagnosed.org

Rare Disease United Foundation
www.rarediseaseunited.org

NIH / National Center Advancing Translational Sciences
www.ncats.nih.gov/about

Dystonia Coalition
www.rarediseasesnetwork.org/cms/dystonia

Unique Chromosome Network
www.rarechromo.org

Wrights Law
www.wrightslaw.com

 

Child Neurology Foundation www.childneurologyfoundation.org

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 ADCY5.org.