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Childhood Conditions & Support Organizations

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BulletNational Organization for Rare Disorders, Inc. (NORD) Established in 1979, the National Association for Parents of the Visually Impaired, Inc. (NAPVI) is a voluntary not-for-profit organization dedicated to providing support to the parents of children with visual impairment.

BulletCHARGE Syndrome CHARGE Syndrome Foundation, Inc. 2004 Parkade Boulevard Columbia, MO 65202-3121 CHARGE Association refers to children with a specific set of birth defects.

Condensered.gif (846 bytes)National Association for Parents of  the Visually Impaired (NAPVI) is a non-profit organization of, by and for parents committed to providing support to the parents of children who have visual impairments.

BulletTHE ACHROMATOPSIA NETWORK  This network, which began to take shape in 1993, has connected with nearly 300 individuals and families around the world who are affected by this rare vision disorder. New members join each month. Someone is considered an active member, when he or she fills out and sends in a membership form (which may be requested by e-mail, postal mail, or telephone. 

BulletFamily Village We are a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.

BulletDowns Syndrome Vision Research Group The Cardiff Down’s syndrome cohort was first set up in 1992 by Bill Fraser and Maggie Woodhouse. Currently we have 143 families involved in our research – some of which have been with us since the beginning! Consequently we have children ranging from 3 months old to 14 years old in the cohort, the majority of whom live in South and West Wales.

BulletFederation for Children with Special Needs  Boston  The Federation is a center for parents and parent organizations to work together on behalf of children with special needs and their families. We can help! Organized in 1975 as a coalition of parent groups representing children with a variety of disabilities, the Federation operates a Parent Center which offers a variety of services to parents, parent groups, and others who are concerned with children with special needs.

BulletOffice of Rare Diseases (ORD) Welcome! You are now connected to a wide range of information brought to you by the Office of Rare Diseases (ORD) at the National Institutes of Health. You will find information about more than 6,000 rare diseases, current research and clinical trials, and support groups.

 

BulletChildren and Adults with Attention Deficit Disorder   Children and Adults with Attention Deficit Disorders (CH.A.D.D.) is a nonprofit parent-based organization formed to better the lives of individuals with attention deficit disorders and those who care for them. Through family support and advocacy, public and professional education and encouragement of scientific research, CH.A.D.D. works to ensure that those with Attention Deficit Disorder are given the opportunity to reach their inherent potential.

BulletNational Marfan's Foundation   Marfan syndrome is a genetic disorder of the connective tissue that can affect the skeletal system, eyes, lungs, blood vessels and heart. The National Marfan Foundation was founded in 1981 to provide accurate and timely information about the disorder to patients, family members and physicians; to serve as a resource for medical information and patient support; and to support and foster research.


 

 



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