Rare Disease

Caregiver Action Network
www.rarecaregivers.org
The Caregiver Action Network (CAN) works  to improve the quality of life for Americans who care for loved ones with chronic or disabling conditions.

Genetic Alliance
www.geneticalliance.org
Genetic Alliance increases the capacity of genetic advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.

Global Genes
www.globalgenes.org
Global Genes promotes the needs of the rare disease community.

National Organization of Rare  Disorders
www.rarediseases.org
The National Organization for Rare Disorders (NORD), is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan“ diseases and assisting the organizations that serve them.

Caregiver Action Network
http://www.rarecaregivers.org/
The Caregiver Action Network (CAN) is  the leading family caregiver organization in the US working to improve the quality of life for Americans who care for loved ones with chronic conditions, disabilities, and disease.

Rare Disease Legislative Advocates
www.rareadvocates.org/about
Rare Disease Legislative Advocates is a collaborative organization designed to support the advocacy of all rare disease groups.

US Food and Drug Administration
www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/ucm385535.htm
Webpage for educational resources for patients, advocacy groups, research investigators, and orphan product developers.

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