CHROMOSOME 1 INFORMATION FOR THE PUBLIC
We sometimes receive requests from individuals with a family member who has a disorder specifically involving chromosome 1. These are usually partial chromosome 1 deletions or translocations. These individuals are often seeking support and information regarding potential prognosis, or may be looking for experts in chromosome abnormalities on chromosome 1.
Because most of these disorders are very rare, we are not aware of any chromosome 1 deletion-specific experts or support groups. However, some of the groups and sources listed below may be helpful for further information.
Support and Advocacy Groups
The Alliance of Genetic Support Groups
- The Alliance of Genetic Support Groups is a non-profit organization dedicated to helping individuals and families who have genetic disorders.
The Chromosome Deletion Outreach
- A list of support groups and contact information for affected individuals and families of affected individuals with Chromosome Deletions,Duplications,Ring Chromosomes,Inversions,Translocations.
National Organization for Rare Disorders
- 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. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Unique and Rare Chromosome Disorder Support Group
- Unique is a source of information, mutual support and self-help to families of children with any rare chromosome disorders including deletions, trisomy, balanced translocations, unbalanced translocations, rings, inversions, duplications, tetrasomy, monosomy, triploidy, isodicentric, marker, mosaic, sex chromosome aneuploidy etc.
Genetic Information and Patient Services, Inc (GAPS)
- "The web's largest listing for links to online definitions, information pages, and support groups for genetic disorders and birth defects."
Information for Genetics Professionals
- This site, at the University of Kansas medical center, is targetted toward genetics professionals. However, it contains many links to sites that could be useful to the general public, including support groups for genetic conditions, and a national listing of clinical genetics centers.
Other Resources
- GeneTests[tm] promotes the appropriate use of genetic counseling and genetic testing in patient care. GeneTests[tm] provides reliable, easy-to-use and current genetic testing information for the benefit of families and their healthcare providers.
- The Genetics Education Center, located at the University of Kansas medical center, contains links to information about the Human Genome Project, and to other sites where you can learn more about genetics.
National Society of Genetic Counselors
- Home page for the National Society of Genetic Counselors (NSGC). Here you can find information about what services a genetic counselor provides, and their ResourceLink, which can help you find a qualified genetic counselor located near you.
- Web interface to Medline, the National Library of Medicine's (NLM) premier bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the health care system, and the preclinical sciences. PubMed is a project developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM), located at the National Institutes of Health (NIH).
- Online Mendelian Inheritance in Man. This database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere, and developed for the World Wide Web by NCBI, the National Center for Biotechnology Information. The database contains textual information, pictures, and reference information. It also contains copious links to NCBI's Entrez database of MEDLINE articles and sequence information.
We would like to hear from you if you find either of these organizations to be helpful, or if you learn of any chromosome-1 specific groups who were able to provide useful support.
Please send e-mail to matise@biology.rutgers.edu