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