Dysmorphology

National Association for Down Syndrome (NADS)
"National Association for Down Syndrome (NADS), a not-for-profit organization, was founded in Chicago in 1961 by parents of children with Down syndrome who felt a need to create a better environment and bring about understanding and acceptance of people with Down syndrome." This site includes information about Down Syndrome, current news, resources available, medical and scientific options available, and a discussion board to share thoughts and feelings related to Down Syndrome.

National Down Syndrome Society, (NDSS)
The National Down Syndrome Society was established "to increase public awareness about Down syndrome; to assist families in addressing the needs of children born with this genetic condition; and to sponsor and encourage scientific research". This web site supplies links to such areas as research, affiliates, special programs, referral services, advocacy, news and donations.

Trisomy 21 Foundation
The Trisomy 21 Foundation was formed by a small group of parents of children with Down Syndrome. "The Foundation has been organized to fund results-oriented research that will have a practical and applicable benefit for infants, children and adults with Down Syndrome". In addition, this site provides the truths and myths of Trisomy 21, new research, membership information, E-Mail, and memorial gifts to the foundation.

Fetal Alcohol Syndrome - National Advocacy & Information Resources
This web site provides directories for education, family empowerment, and Fetal Alcohol Syndrome family resources. In addition, it supplies links to the mentalhealth internet resource journal, hotlines, resource directory, and professional networks.

Fetal Alcohol Syndrome
This Fetal Alcohol Syndrome (FAS) web site is located within the Northeast Consultation and Training Center web page. This site contains facts about FAS/ Fetal Alcohol Effects (FAE), treatment of children with FAS/FAE, educating children with FAS/FAE, and parenting children with FAS/FAE.

FRAXA Research Foundation
The FRAXA Research Foundation is a nonprofit organization governed by parents and medical professionals. FRAXA funds medical research that is aimed at finding a specific treatment for Fragile X. This site provides detailed information regarding symptoms, the cause, testing, and treatment of Fragile X. In addition, specific grant and fellowship application materials, as well as needed help and involvement information, can be obtained from this site.

GeneClinics: Fragile X Syndrome
"The GeneClinics knowledge base, an "electronic textbook," is an authoritative, frequently updated resource to help health care professionals relate genetic testing to the diagnosis, management, and counseling of patients and families with inherited disorders.

Hemophilia (Bleeding Disorders, Hemophilia)
The Hemophilia Home Page contains vast information regarding Hemophilia and AIDS. Gene therapy, hemophilia organizations, U.S. government legislative information and memorials are only a few of the links available. In addition, a chat server and E-Mail address are supplied.

National Hemophilia Foundation
The National Hemophilia Foundation- Table of Contents web page provides information regarding the annual report, board members, various chapters, contacting the National Hemophilia Foundation, and wanted ads.

National Marfan Foundation
"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." The option to search the National Marfan Foundation (NMF) web site via keywords is available. In addition, the NBC's Today Show featured a segment on the NMF which is available to purchase through this site. Possible links from this web page include publications, support and contacts, connective issues, on-line resources, and people in the community.

Disorders Similar to Marfan Syndrome
The Disorders Similar to Marfan Syndrome web site include information related to connective tissue disorders such as Ehlers-Danlos Syndrome, CCA (aka Beals), and Stickler Syndrome. Brief information on Curtis Laxa and Noonan Syndrome is also made available. In addition, congenital heart defects such as Long QT Syndrome and cardiomyopathy are discussed.

The National MPS Society
The National MPS Society was originally developed by parents of children with mucopolysaccharidoses or mucolipidoses. The ultimate goal of the National MPS Society "in addition to being a support group, is to increase participation by regions, support research into areas such as carrier detection, early diagnosis, bone marrow transplantation, gene therapy and hopefully to the eventual finding of a cure". The history of the MPS Society, the MPS forum, E-mail connections to the scientific advisory board, links to other MPS sites, membership information, and MPS booklets are some of the information presented in this site.

Neural Tube Defects
This Neural Tube Defects web page contains pictures from patients or autopsy specimens with neural tube defects. Ancephaly and spina bifida are two of the defects that can be studied at this site.

Pierre Robin Syndrome
The Pierre Robin Syndrome web page is part of a larger web site known as Specific Diagnoses Card Catalog. From this page, extensive information regarding Pierre Robin Syndrome can be reviewed. Additional Pierre Robin Syndrome web site information and chat rooms are also available at this site.

The Prader-Willi Syndrome Association (USA)
The Prader-Willi Syndrome Association has as its stated mission: "to provide to parents and professionals a national and international network of information, support services, and research endeavors to expressly meet the needs of affected children and adults and their families." This web site provides basic facts, diagnostic criteria, interventions, and a glossary of terms associated with Prader-Willi Syndrome (PWS). In addition, publications, current research reports, and personal stories can be found at this site.

The Turner's Syndrome Society of the US
"The Turner's Syndrome Society is a non-profit organization whose mission is to: increase public awareness and understanding of Turner Syndrome; increase understanding of those affected by Turner Syndrome about the condition and its associated problems; provide a forum where those affected by Turner Syndrome can become acquainted with others in similar situations; and work together with medical and health-care professionals to better  understand the condition through research and communication of ideas." This site provides information regarding Turner's Syndrome, how to join the society, Turner's Syndrome people, conference and meetings, and other resources available.

Velo-Cardio-Facial Syndrome
"Velocardiofacial syndrome, also known as Shprintzen syndrome, is one of the most common genetic disorders in humans. This web site is devoted to providing information on the syndrome for families and professionals dealing with VCFS and related issues through support group information, links to articles on VCFS and various resources on the web."

Craniofacial Anomalies
The Craniofacial page is accessed through the Pediatric Neurosurgery Home Page. Information provided in this page was written for parents and families of children with specific conditions requiring care from a neurosurgeon. Both written text and pictures regarding craniofacial anomalies can be retrieved from this site.

Dysmorphic Syndromes
This web site was developed to provide information on dysmorphic syndrome features. The syndromes are located alphabetically to allow for easy access. The links to the specific syndromes provide written text and clinical synopses. References are also available.