Global Genes
Global Genes is a leading rare disease advocacy organization. Their mission is to eliminate the challenges of rare disease. They have developed RARE Toolkits, which we think you may find valuable. To view these and other toolkits, please visit their website.

NORD - National Organization for Rare Disorders, Inc.
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

NIH - Office of Rare Diseases
The Office of Rare Diseases (ORD) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH). On November 6, 2002, the President established the Office in statute (Public Law 107-280, the Rare Diseases Act of 2002). A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 million people in the United States have a rare disease.

Unique UK 
Rare Chromosome Disorder Support Group, G1, The Stables, Station Road West, Oxted, Surrey RH8 9EE, United Kingdom Tel/Fax: +44(0)1883 723356 info@rarechromo.org IIII www.rarechromo.org

Rare Science
RARE Science is a nonprofit research organization created to accelerate therapeutic solutions for patients and to foster research collaboration in the rare disease community. The organization provides services to patient advocates/Foundations and researchers through a secure, common information platform called the RARE Hub.