Chromosome Disorders
See also Trisomy 21 - Down Syndrome, Trisomy 13, 18, Chromosome 4 Deletions - Wolf-Hirschhorn Syndrome, Klinefelter Syndrome

Who to Contact
Make Connections with Other Families
Learn More About It
Chromosome Specific Web Sites
Web Sites
Search Google for "Chromosome Disorders"

Who to Contact

Chromosome Deletion Outreach
P.O. Box 724
Boca Raton, FL 33429-0724
561-395-4252 (family helpline)
http://www.chromodisorder.org/

This non-profit, international, all volunteer, parent support organization was founded in 1992. Its membership consists of individuals, families and professionals seeking information regarding a variety of chromosome disorders. Although its main focus in the past has been on deletions, it does currently have many members that are concerned with additions, inversions, translocations and rings.  CDO has a  mission to provide support to parents of children born with rare chromosome disorders, gather together and share information, and to promote research and a positive community understanding of these disorders.  With an extensive library of available up-to-date articles, detailed registry, newsletters, research opportunities, interaction with our medical advisory board, and a listserv that’s online 24 hours a day, CDO is able to provide support and information to families around the world.
 

National Center for Chromosome Inversions
c/o Jacqueline Barker
282 SE Anastasia Street
Lake City, Florida 32025 USA
386-752-1548 (phone)
E-mail: ncfci@msn.com

The National Center For Chromosome Inversions is a non-profit corporation that acts as a information clearing house for patients and their families, that have been diagnosed with a chromosome inversion of any kind. All services provided by the NCFCI are free of charge, and provided by volunteers. The president of the NCFCI is Jacqueline Barker. Jacqueline is a licensed registered nurse and a certified medical assistant with over 20 years experience in the medical field. Jacqueline created the National Center For Chromosome Inversions to assist families who are having to deal with genetic abnormalities & handicaps created by chromosomal inversions. The majority of patients assisted by the NCFCI are the parents of young children who have just been diagnosed with a specific, rare chromosome inversion. Most of the families who have a family member diagnosed with a chromosome inversion do not know where to turn, what to do, or where to get help. This is where the NCFCI is able to make the families aware of their support systems, options and services that may available to them.

Alliance of Genetic Support Groups
4301 Connecticut Ave., NW Suite 404
Washington, DC 20008-2304
202-966-5557
202-966-8553 (fax)
E-mail: info@geneticalliance.org
Website: http://www.geneticalliance.org/

The Genetic Alliance is an international coalition comprised of millions of individuals with genetic conditions and more than 600 advocacy, research and health care organizations that represent their interests. As a broad-based coalition of key stakeholders, the Alliance builds partnerships to promote healthy lives for all those living with genetic conditions. Our guiding principles are a dynamic statement of the mission and vision that infuse all Alliance endeavors. With a 16-year history as a 501(C)(3) not-for-profit, the Alliance identifies solutions to emerging problems and endeavors to reduce obstacles to rapid and effective translation of research into accessible technologies and services.

Make Connections with Other Families

• 1p36
  For parents of children who have 1p36 chromosome deletion.
   
• Chromosome-123
  This is a group for those interested in chromosome anomalies involving the three biggest chromosomes, chromosomes 1, 2 or 3. It's especially intended for parents of kids with these chromosome anomalies, but anyone with an interest in these conditions is welcome.

• Chromosome 8
  For those diagnosed with Chromosome 8 anomalies and their friends, families, and professionals.
   
• 10qdeletion - Chromosome 10q Deletion Support Group
  This group is intended as a support for families, caregivers, and persons affected by deletions on chromosome 10q. By joining together we can be advocates for 10q
  research, inform each other of new information, and be a support to one another every day.
   
• Deletion13q - Chromosome Deletion 13
  Chromosome Deletion 13 supports families affected by this rare genetic disorder.
   
• Inverted-Dup15 - IDEAS Family Listserve
  Created to bring together families and professionals to share information, stories and ideas about duplications of chromosome 15q.

• Chromosome 18 Kids
  A gathering place for families that are caring for children with chromosome 18 disorders.

• Ring 18
  The Ring 18 e-mail list is to provide information and support to families affected with the chromosome syndrome Ring 18.

• 18q-Post
  Listserve for members of The Chromosome 18 Registry to share experiences.

• Tetrasomy18p
  A private community for those who have loved ones with this rare genetic syndrome. It is a syndrome based on chromosome 18.

• 18p-
  The 18p- e-mail list is to provide information and support to families affected with the chromosome syndrome 18p-.

• Chromosome 22 Central List
  For families and professionals interested in Chromosome 22
   
• Ring 22
  A resource for families and friends of people with ring chromosome 22.

• XXYNOY
  This is a list for parents of xxy sons, or other sex chromosome anomalies. Learning and supporting each other is the goal. It is a restricted list and members must be approved by the moderator.

• Chromosome Deletion Outreach
  CDO provides support & information to families affected by any rare chromosome disorder. This group provides parenting support for those with babies and young children.

• CDO Families
  Chromosome Deletion Outreach, Inc. (CDO) provides support and information to families affected by rare chromosome disorders. This group provides parenting support specifically for those who have older children, teens or adults.
   
• Trisomy Med
  An e-mail based support group for families, friends and health professionals who share a common interest in the rarer trisomy conditions. The Tri-Med part of the list is strictly for the discussion of on-topic issues related to trisomy. Because of the relative rarity of these conditions, families are often separated by large distances. The technology of the internet offers us the unique opportunity to share our information,joys and sorrows, offer support and comfort to each other regardless of where we are geographically. List members represent many different trisomy conditions (including full, partial, mosaic, ring, 18, 14, 13, 8, 6, 4 etc.) and live in many different countries.
   

Learn More About It

• Search the Medline Data Base

• Search Online Mendelian Inheritance in Man

• Chromosome Deletion Outreach Library

Chromosome Specific Web Sites

• Chromosome 1 WWW Page
   
• Chromosome 2 Deletions

• Chromo-Zone - Chromosome 2 Deletions

• Chromosome 3 Registry

• 4p- — Wolf-Hirschhorn Syndrome

• 5p- — Cri du Chat Syndrome

• Chromosome 7 Project
   
• Recombinant 8 Syndrome Support
   
• Trisomy 9 International Parent Support
   
• Monosomy 9P — Alfi's Syndrome

• Distal Trisomy 10q Families

• Chromosome 11 Deletion/WAGR Syndrome Support Group

• 11q Research and Resource

• European Chromosome 11q Network

• Trisomy 13 - SOFT

• Chromosome 15 — IDEAS:Inverted Duplication, Exchange, Advocacy & Support

• Chromosome 17 Interstitial Deletion - Smith Magenis Syndrome

• Chromosome 18 Registry & Research Society

• T20 - Trisomy 20 Support Group

• Chromosome 22 Central

• Trisomy X

General Web Sites

• Chromosone Deletion Outreach
  

• Genetic Disorders by Chromosome

• National Center for Biotechnology Information

• Online Genetic Support Groups and Other Health Related WWW Sites

• Prenatal Diagnosis Web Page