Resources

A non-profit medical research foundation started by a group of parents with the mission of finding potential therapies that can be tested clinically in the near future. It is our desire to advance research, education and improve the quality of life for the children affected by this disorder. This foundation has been formed to receive and distribute funds for scientific and educational purposes. 518-879-6571

PCPID aims to provide advice and assistance to the President of the U.S. and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual disabilities as well as the field of intellectual disabilities. The mission of this foundation is to improve the quality of life experienced by people with intellectual disabilities by upholding their full citizenship rights, independence, self-determination, and lifelong participation in their communities.

The National Consortium on Leadership and Disability for Youth (NCLD/Y) serves as a national youth-led information, training, and resource center. NCLD/Y has a four-pronged focus on working on developing leaders, developing the capacity of centers for independent living to serve those leaders, the capacity of the staff working directly with the leaders, and supporting the cadre of youth with disabilities-related organizations. 877-871-0744 or 877-871-0665 (TTY)

NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of Presidential and Congressional appointees, an Executive Director appointed by the Chair, and a full-time professional staff. 202-272-2004

The National Organization on Disability (NOD) is a private, non-profit organization that promotes the full participation and contributions of America’s 57 million people with disabilities in all aspects of life. Today, the National Organization on Disability focuses on increasing employment opportunities for the 80-percent of working-age Americans with disabilities who are not employed. To achieve this goal, NOD works with leading employers and partners with educational and philanthropic institutions to pilot innovative approaches to disability inclusion, then scales these up into initiatives with even broader impact. 646-505-1191 email: info@nod.org

The National Association of State Directors of Developmental Disabilities Services (NASDDDS) represents the nation's agencies in 50 states and the District of Columbia providing services to children and adults with intellectual and developmental disabilities and their families. The association's goal is to promote and assist state agencies in developing effective, efficient service delivery systems that furnish high-quality supports to people with intellectual and developmental disabilities, NASDDDS strives to provide member state agencies with timely analyses of federal statutory and regulatory policies that affect people with disabilities; disseminate cutting edge information on state-of-the-art programs and service delivery practices; provide technical assistance and support to member states; and offer a forum for the development of state and national policy initiatives. 703-683-4202

The National Association of Councils on Developmental Disabilities (NACDD) is the national association for the 56 Councils on Developmental Disabilities (DD Councils) across the United States and its territories. The DD Councils receive federal funding to support programs that promote self-determination, integration, and inclusion for all people in the United States with developmental disabilities. They provide technical assistance to all DD Councils, advocate for DD Councils’ appropriations in Congress, and convene DD Councils for leadership and development training. 202-506-5816

NORD provides information about rare disorders, encourages and promotes research, and represents people who have rare diseases when it educates the public and medical professionals about these disorders. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD offers medication assistance programs to assist uninsured or underinsured individuals in securing lifesaving or life-sustaining medications; a confidential networking program for members to stimulate the exchange of information and mutual support with others who have the same disorder; a resource guide; and a library of links to other organizations. 203-744-0100

The National Down Syndrome Congress (NDSC) is a membership-sustained not-for-profit organization dedicated to an improved world for individuals with Down syndrome. The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome. 1-800-232-6372 email: info@ndsccenter.org

The National Disability Rights Network (NDRN) works to improve the lives of people with disabilities by guarding against abuse; advocating for basic rights; and ensuring accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems. Membership is free for Protection and Advocacy Systems and Client Assistance Programs. 202-408-9514 or 202-408-9521 (TTY)