Resources- Specific Diagnosis Card Catalog- Carbohydrate- Chromosome Disorders

Who To Contact

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

This non-profit, internatioal, 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.

National Center for Chromosome Inversions
c/o Jacqueline Barker
Rt. 12 - Box 412
Lake City, Florida 32025 USA
386-752-1548 (phone)
E-mail: ncfci@msn.com
Web: www.barkersnet.com/ncfci/

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
Web: 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.

Where to go to Chat with Others?

1p36
For parents of children who have 1p36 chromosome deletion.

Chromosome 8
For those diagnosed with Chromosome 8 anomalies and their friends, families, and professionals.

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

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.

Family Village Parent-to-Parent Web Boards

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.