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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.

International WAGR/11p Deletion Syndrome Association

International network. Founded 2000. Provides inforamtion, 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
E-mail: reachingout@wagr.org
Verified: 8/13/2013

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 purseful 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: info@xxyysyndrome.org
Verified: 9/19/2013

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: 9/10/2013

Unique

International. * Support for individuals, families, caregivers and professionals of individuals with chromosome disorders.
Write:
Unique
P.O. Box 2189
Caterham, Surrey, UK CR3 5GN
Voice: +44 (0) 1883 330766
Website: http://rarechromo.org
E-mail: info@rarechromo.org
Verified: 9/13/2013

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 sundrome, fragile X-associated tremor/ataxia syndrome and fragile X-associated primary ovarian insufficiency). Services include a quarterly journal, regional and international conferences and educational materials (free and fee-based).
Write:
National Fragile X Foundation
P.O. Box 37
Walnut Creek, CA 94597
Voice: 1-800-688-8765
Fax: 925-938-9315
Website: http://www.fragilex.org and http://www.fxtas.org
E-mail: natlfx@fragilex.org
Verified: 2/12/2013

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
7108 Partinwood Dr.
Fuquay-Varina, NC 27526
Voice: 919-567-8167
Website: http://www.c22c.org
E-mail: murney.rinholm@c22c.org
Verified: 9/13/2013

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: 9/4/2013

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 discorder.
Website: http://tetrasomy.com
E-mail: tetra-x-list-subscribe@yahoogroups.com (to join Yahoo support group) and thomass@dca.net
Verified: 9/17/2013

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: 9/3/2013

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: 9/19/2013

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: 9/13/2013

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