Chromosome Disorders

Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

Chromosome 22 Central

International network. Founded 1996. Networking and support for parents of children with any chromosome 22 disorder. Supports research. Offers literature, phone support, newsletter and e-mail support lists. Online bulletin boards.
Write:
Chromosome 22 Central
c/o Murney Rinholm, 7108 Partinwood Dr.
Fuquay-Varina, NC 27526
Voice: 919-567-8167
Website: http://www.c22c.org
E-Mail: murney.rinholm@c22c.org
Verified: 3/12/2014

The Chromosome 18 Registry and Research Society

International network. Founded 1990. Provides support and education concerning abnormalities of chromosome 18. Encourages and conducts research into areas that impact families. Links affected families and their physicians to the research community. Newsletter, phone support, annual conference, information and referrals. Dues $20 (US); $25 (International).
Write:
The Chromosome 18 Registry and Research Society
7155 Oakridge Drive
San Antonio, TX 78229
Voice: 210-657-4968
Website: http://www.chromosome18.org
E-Mail: office@chromosome18.org
Verified: 2/19/2014

FRAXA Research Foundation

International. 30 affiliated groups. Founded 1994. Support and information on Fragile X syndrome. Funds medical research, investigator-initiated grants and postdoctoral fellowships. Newsletter and literature. Some chapters have support group meetings. Guidelines available on starting a similar group.
Write:
FRAXA Research Foundation
10 Prince Place, Ste. 203
Newburyport, MA 01950
Voice: 978-462-1866
Website: http://www.fraxa.org
E-Mail: info@fraxa.org
Verified: 2/19/2014

The National Fragile X Foundation

International. Founded 1984. Mission includes phone and e-mail support, promoting awareness, education, research and legislative advocacy regarding Fragile X associated disorders (fragile x syndrome, fragile X-associated tremor/ataxia syndrome and fragile X-associated primary ovarian insufficiency). Services include a an annual anthology, webinars, podcasts, bi-annual international conferences and educational materials (free and fee-based).
Write:
National Fragile X Foundation
1615 Bonanza St., Ste 202
Walnut Creek, CA 94597
Voice: 1-800-688-8765
Website: http://www.fragilex.org
E-Mail: natlfx@fragilex.org
Verified: 2/19/2014

Chromosome Disorder Outreach, Inc.

National network. Founded 1992. Organization providing support and information to families affected by rare chromosome disorders. Membership is free.
Write:
Chromosome Deletion Outreach
P.O. Box 724
Boca Raton, FL 33429-0724
Voice: 561-395-4252
Fax: 561-395-4252
Website: http://www.chromodisorder.org
E-Mail: info@chromodisorder.org
Verified: 3/11/2014

49XXXXY

National network. Founded 1990. Mutual support and networking for families affected by 49XXXXY disorder. Information, pen pals, phone support and newsletter.
Write:
49XXXXY
870 Miranda Green
Palo Alto, CA 94306
Voice: 650-941-2408
Website: http://klinefeltersyndrome.org/49er.htm
E-Mail: epwatzka@gmail.com
Verified: 3/12/2014

International WAGR/11p Deletion Syndrome Association

International network. Founded 2000. Provides information, encourages research and support to persons with WAGR/11p Deletion syndrome or aniridia, their families, physicians and teachers. Literature, free bi-annual newsletter, networking, phone support, information and referrals. E-mail support group.
Write:
International WAGR Syndrome Assoc.
PO Box 392
Allen Park, MI 48101
Voice: 313-381-4302
Website: http://www.wagr.org
Verified: 2/7/2014

Unique, Understanding Chromosome Disorders

International. * Support for individuals, families, caregivers and professionals of individuals with chromosome disorders.
Write:
Unique
Station Road West, Unit G1
Oxted, Surrey, UK RH8 9EE
Voice: +44 (0) 1883 723356
Website: http://rarechromo.org
E-Mail: info@rarechromo.org
Verified: 2/19/2014

Chromosome 9P- Network

International network. Founded 1983. Aim is to improve the lives of families affected by 9P Deletion Syndrome (aka Alfi's Syndrome or Monosomy 9p) by connecting families, offering knowledge and improving access to information about this rare genetic disorder. Encourages research. Fund-raises. Publishes annual Yearbooks, and supports family reunions. Online eGroup for affected families to network and support each other. Open Facebook page for extended families, friends and professionals.
Write:
Chromosome 9P- Network
PO Box 524
Appleton, WI 54912
Website: http://www.9pminus.org
E-Mail: 9pminusinfo@gmail.com
Verified: 11/7/2013

Chromosome Ring 14 Support Group

Online. Provides support for parents of children with Ring Chromosome 14 Syndrome, a rare human chromosome abnormality which causes a number of serious health issues, most notably recurrent treatment-resistant seizures and intellectual disability.
Website: http://www.facebook.com/groups/ring14
Verified: 3/5/2014

Tetrasomy and Pentasomy X Syndrome Information and Support

Online. Founded 2002. Provides information and support for families, educators and professionals working with the families of children with Tetrasomy X and Pentasomy X Syndromes, two chromosomal disorder.
Website: http://tetrasomy.com
E-Mail: tetra-x-list-subscribe@yahoogroups.com (to join Yahoo support group) and thomass@dca.net
Verified: 3/12/2014

The XXYY Project

National. Provides resources for support, education, medical research and information for parents and individuals with XXYY Syndrome, a rare genetic disorder. The organization helps males with XXYY to lead purposeful and productive lives.
Write:
The XXYY Project
PO Box 2172
Littleton, CO 80161-2172
Voice: 1-888-503-3456 or 303-400-3456
Website: http://www.xxyysyndrome.org
E-Mail: inquiry@xxyysyndrome.org
Verified: 2/18/2014

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