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Down syndrome, trisomy 18, trisomy 13, 11q, trisomy 9, 4p-, cri-du-chat, deletions, inversions, duplications, translocations, ring, sex-chromosome anomalies, mosaicism, fragile-x syndrome, other trisomy, variations, cancer cytogenetics, other cytogenetic resources

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1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | X & Y
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All Chromosomal Conditions (deletions, translocations, trisomy, other)

Chromosome Deletion Outreach
P.O. Box 724, Boca Raton, FL 33429-0724
Phone: 888.236.6880 (toll free)
E-mail: info@chromodisorder.org
Web site: www.chromodisorder.org/
 
UNIQUE: Rare Chromosome Disorder Support Group
P.O.Box 2189, Caterham Surrey CR3 5GN England
Telephone:  44 (0)1883 330766
E-mail: info@rarechromo.org 
URL: www.rarechromo.org
Little Yellow Book: Guide to Rare Chromosome Disorders (.pdf file)
Chromosome Mosaicism, JFurnival and WRobinson, University of British Columbia, Research Institute for Children’s and Women’s Health, Vancouver, BC Canada
Caring, Inc.
PO Box 400, Milton, WA 98354
Phone: 206.922.8607
Trisomy Online, family site
Trisomy Net Ring family sites about Trisomy and related information
Chromosome Rearrangements Discovered Through Prenatal Diagnosis, booklet for families about unusual chromosome abnormalities detected by prenatal diagnosis. Inversions, translocations and markers. Also in Spanish
Chromosomes, Human Genome Landmarks
Human Chromosomes, Oak Ridge National Laboratories

Rainbows Down Under, Trisomy and other syndromes, Australia

Cytogenetic Resources, University of Kansas Medical Center

Chromosome 4

4p- Support Group (Wolf Hirschhorn Syndrome)
2585 Taylor, Longview, WA 98632
Phone:  360.577.9033
Web site: www.4p-supportgroup.org
E-mail contact: fourpminus@4p-supportgroup.org
New parent / member information, newsletters, listserv, biographical information exchange, regional / national contacts
Wolf-Hirschhorn Guidebook, UNMC, 600 S. 42nd Street, PO Box 985450, Omaha, NE 68198-5450, Phone: 402.559.7467, Fax: 402.559.5737, E-mail:  mrimedia@unmc.edu

Chromosome 5

5p- Society (Cri-du-Chat)
11609 Oakmont, Overland Park, KS 66210
Phone: 913.469.8900
E-mail: fivepminus@aol.com
Web Site: http://www.fivepminus.org/
 
Cri Du Chat Support Group of Australia Inc.
5 Connal Drive, Frankston, VIC 3199
E-mail: maggiecdc@bigfoot.com
Web site: http://www.vicnet.net.au/~criduch/

Chromosome 7

Chromosome 7 Information
The Hospital for Sick Children
Department of Genetics Room 9102
555 University Avenue, Toronto Ontario M5G 1X8 Canada
Web Site: www.genet.sickkids.on.ca/chromosome7/

Chromosome 8

8p Duplication Support Group
Genetics Center, Children's Medical Center, 1 Children's Plaza
Dayton, OH 45404
Phone: 937.641.5645 (Faith Callif-Daley) - Fax: 937.641.5325
E-mail: callif-daleyf@childrensdayton.org
Trisomy 8 Informal Support Group
E-mail: khallent@aol.com

Chromosome 9

Chromosome 9p Network (merger of Support Group for Monosomy 9p- and Support Group for 9p-)
393 N. Grass Valley Rd., Pine Valley, UT 84781
Phone: 435.574.1121 - Fax: 435.574.2000
E-Mail: beverly.udell@9pminus.org
Web Site: www.9pminus.org

Bill & Alice Todd
4027 E. Piedmont Dr., Highland, CA 92346
Phone: 909.862.4470 - Fax: 909.862.4470
E-mail: atoddna@sprynet.com

Chromosome 11

11q Research and Resource Group
6123 A. Duncan Road, Petersburg, VA 23803
Phone: 804.863.2114 - Fax: 804.828.5383
E-mail: mspace@vcu.edu
Web site: www.11q.net

European Chromosome 11q Network
Annet van Betuw
Else Mauhsstraat 7, 6708 NJ Wageningen, Netherlands
E-mail: avbetuw@wxs.nl
Web site: www.11q.org (http://home01.wxs.nl/~avbetuw/home.htm)
Materials in Dutch, English, German, Italian, and "Scandinavian" (for Norwegian, Swedish and Danish families)

International 11;22 Translocation Network
Stephanie St-Pierre
232 Kent Avenue, Timmins, Ontario, CANADA P4N 3C3
E-mail: mum2_1@hotmail.com
Phone/ Fax: 705.268.3099
Web site: www.nt.net/~a815/index.html
Materials in English, French, German, Dutch, Spanish
Chromosome 11 Deletion / WAGR Syndrome Support Group
2063 Regina, Lincoln Park, MI 48146
Email: TheMooZoo@aol.com

See also Jacobson Syndrome (11q24.1 deletion)

Chromosome 13  (In some references, Trisomy 13 is called Patau Syndrome)

SOFT (Support Organization for Trisomy 18, 13, other)
Support Organization for Trisomy 18, 13 and Related Disorders
2982S Union St., Rochester, NY 14624
Phone: 716.594.4621
Web site: www.trisomy.org/
Guide for professionals

S.O.F.T. Australia
198 Oak Road, Kirrawee NSW 2232 Australia
Phone: 02.9521.6039
E-mail: karens@tig.com.au

Chromosome 14

Chromosome 14, Human Genome Landmarks
Human Chromosome 14, Oak Ridge National Laboratories

Associazione Internazionale Ring14
34 - 42100 Reggio Emilia, Italy
Phone: 39 0522/322607 - Fax: 39 0522/324835
E-mail: info@ring14.com
Web site: www.ring14.com new

Chromosome 15 - isodicentric 15 (formerly, inverted duplication 15)

Isodicentric 15 Exchange, Advocacy, and Support (IDEAS)
416 Big Mount Road, Thomasville, PA 17364-9768
Phone: 717.225.5229 - Fax: 610.891.2062
E-mail: ideas@craftech.com
Web site: www.idic15.org new

Chromosome 17

Parents & Researchers Interested in Smith Magenis Syndrome (PRISMS)
11875 Fawn Ridge Lane, Reston, VA 22094
Phone: 703.709.0568
E-mail: acmsmith@nchgr.nih.gov
Web site: www.kumc.edu/gec/support/smith-ma.html

Chromosome 18 (In some references, Trisomy 18 is called Edwards Syndrome)

SOFT (Support organization for Trisomy 18, 13, other) - for families with child with Trisomy 18, 13 or other chromosome disorders - annual conferences, literature, newsletter, and other
Web site: www.trisomy.org/
Guide for professionals
Trisomy 18 Foundation
4491 Cheshire Station Plaza, Suite 157
Dale City, VA 22193
Phone: 703.878.7013, Fax: 703.878.4965
Email: vjmiller@trisomy18.org
Web site: www.trisomy18.org
NIH,  ghr.nlm.nih.gov/condition/trisomy-18/show/Patient+support
NHGRI, www.genome.gov/11508982
National Library of Medicine: ghr.nlm.nih.gov/chromosome/18
S.O.F.T. Australia
198 Oak Road, Kirrawee NSW 2232, Australia
Phone: 02.9521.6039
E-mail: karens@tig.com.au
Web site:  www.challengenet.com/~SOFT/index.htm

Chromosome 18 Registry & Research Society
6302 Fox Head, San Antonio, TX 78247
Phone: 210.657.4968 - Fax: 210.657.4968
E-mail : cody@uthscsa.edu
Web site: www.chromosome18.org/

Support Organization for Trisomy 18, 13 and Related Disorders
2982S Union St, Rochester, NY 14624
Phone: 716.594.4621
Rainbows Down Under -  Trisomy 18 and related disorders site by a parent, Australia

Chromosome 20

Ring 20 Chromosome Support Group (forming spring 1999)
155 Newell Ave, St. Clairsville, OH 43950
E-mail: tapritch@1st.net

Chromosome 21 (Down Syndrome)

Association for Children with Down Syndrome
2616 Martin Avenue, Bellmore, NY 11710-3169
Phone: 516.221.4700 - Fax: 516.221.4311
Web site: www.acds.org/

Down Syndrome Research Foundation & Resource Centre
3580 Slocan Street, Vancouver, BC, Canada V5M 3E8
Phone: 604.431.9694 or 1.888.464.dsrf (in British Columbia only)
Fax: 604.431.9248
E-mail: dsrf@sfu.ca
Web site: www.dsrf.org
(Links to Down Syndrome materials in Danish, French, Italian, Japanese, Korean, Portuguese, Swedish, Spanish, Turkish, other)

Canadian Down Syndrome Society
Box 52027, Calgary, Canada CN T2E 8K9
Phone: 403.253.5825
Babies with Down Syndrome - for parents whose baby has been recently diagnosed with Down Syndrome or patients continuing affected pregnancies, this site provides useful information and links to other sources of support
Web site: www.nas.com/downsyn/welcome.html

National Association for Down Syndrome
P.O. Box 4542, Oak Brook, IL 60522-4542
Web site: www.nads.org/

National Down Syndrome Congress
1605 Chantilly, Atlanta, GA 30324-3269
Phone: 800.232.6372 or 404.633.1555
Fax: 404.633.2817

National Down Syndrome Society
666 Broadway, New York, NY 10012-2317
Phone: 800.221.4602 or 212.460.9330
Fax: 212.979.2873
Web site: www.ndss.org/
Mosaic Down Syndrome (MDS)Page

Parent Assistance Committee on Down Syndrome
208 Lafayette Avenue, Peekskill, NY 10566
Phone: 914.739.4085
International Foundation for Genetic Research
400 Penn Blvd., Suite 721, Pittsburgh, PA 15235
Phone: 412.823.6380

International Mosaic Down Synrome Association (IMDSA)

Other Down Syndrome Sites: 

Chromosome 22

Chromosome 22 Central
[Cat Eye Syndrome, Ring 22, 11;22 Translocation, 22q- Syndromes]
237 Kent Avenue, Timmins, ON CANADA P4N 3C2
Phone/ Fax:  705.268.3099
E-mail: a815@c22c.org
Web site: www.c22c.org

22q13 Deletion Syndrome Foundation
c/o MC Phelan, Ph.D., Genetic Diagnostic Laboratory
T.C. Thompson Children's Hospital, 910 Blackford Street - Suite 401 MPB
Chattanooga, TN 37403
Phone: 423.778.6279 - Fax: 423.778.3164
E-mail: phelanK@erlanger.org

International 11;22 Translocation Network
Stephanie St-Pierre, 232 Kent Avenue
Timmins, Ontario, CANADA P4N 3C3
E-mail: mum2_1@hotmail.com
Phone/fax: 705.268.3099
Web site: www.nt.net/~a815/index.html
Materials in English, French, German, Dutch, Spanish
22q11 microdeletion syndrome, small piece of missing chromosome material at breakpoint 22q11, deletion is associated with Velo-Cardio-Facial Syndrome (VCFS, Shprintzen Syndrome), DiGeorge Sequence, CATCH 22, Conotruncal Anomaly Face syndrome (CAFS) (Japan) and is sometimes seen in Opitz G/BBB syndrome, CHARGE Association and Cayler-Cardio-Facial Syndrome. Physicians have different preferences in terminology:

Chromosome X and / or Y (sex chromosome anomalies):
Fragile-X Syndrome | Klinefelter syndrome 47,XXY | XXXXY | XXYY | Turner Syndrome 45,X and variants 
| Triple X Syndrome 47,XXX | Tetrasomy/ Pentasomy X Syndrome 48,XXXX | XYY Syndrome 47,XYY | References |

Fragile-X Syndrome

Klinefelter Syndrome

Klinefelter Syndrome & Associates, Inc.
PO Box 119, Roseville, CA 95678-0119
Phone: 916.773.1449 - Fax: 916.773.1449
e-mail: melissa@genetic.org or raylstoc@ix.netcom.com or ks47xxy@ix.netcom.com
Web site: www.genetic.org/
The Even Exchange Newsletter
Note: The name of this group may be changed in the future to the X & Y Family Genetic Network and include XXX, and XXY and multiple sex chromosome variants
A Guide for XXY Males and Their Families, RBock, National Institute of Child Health and Human Development
Klinefelter Syndrome (XXY), Turner Center For Information, Counselling, and Research
Klinefelter Syndrome: An Orientation, Turner Center, Information, Counselling, Research

Chromosomal Problems Discovered through Prenatal Diagnosis: Klinefelter Syndrome, (.pdf) PacNorGG spanish version

Klinefelter Syndrome Support Group Home Page, numerous links, resources, including information on variants 48,XXXY and 48,XXYY, or variant 49, XXXXY, international groups, listservs

XXXXY

49,XXXXY information, Klinefelter Syndrome Organization
10001 N E 74th Street, Vancouver, Washington, USA 98662-3801
Phone: 360.892.7547
E-mail:  kimbj@juno.com
Newsletter, 49er Banner
XXXXY Syndrome

XXYY

XXYY Home Page

Turner Syndrome

Turner Syndrome Society of the United States
14450 T.C. Jester, Suite 260, Houston, TX  77014 USA
Phone:  800.365.9944 or 832.249.9988
Fax:  832.249.9987
Website:  www.turner-syndrome-us.org
Turner Syndrome Organizations Worldwide
Brochure, 2002 (.pdf)
Camps for individuals with Turner Syndrome
The Turner Center For Information, Counselling, and Research
The Psychiatric Hospital in Aarhus
Skovagervej 2, DK-8240 Risskov. Denmark
Telephone: +45 86 17 77 77
Fax: +45 86 17 59 77
E-mail: mpr@cybernet.dk
Web sitewww.aaa.dk/turner/ENGELSK/
English versions of Danish booklets, by Johannes Nielsen
(+45 86 17 77 7, x 549)
Turner Syndrome Booklet and Turner Syndrome Orientation
Also available:
Klinefelter Syndrome (XXY)
Klinefelter Syndrome: An Orientation
XYY Syndrome - see XYY Syndrome: An Orientation
Triple-X Syndrome (XXX) - see Triple X Females. An Orientation
Turner Centret Ĺrsberetning, Denmark
Endocrine and Turner Syndrome, fact sheet, Endocrine Society and the Hormone Society
Turner Syndrome Society of Kansas City (KS / MO)
Turner Syndrome Resources
Turner Syndrome Society of Canada
814 Glencairn Ave., Toronto, Ontario M6B 2A3
Phone: 800.465.6744 or 416.781.2086
Fax: 416.781.7245

L'association du syndrome de Turner du Québec, french

Turner Syndrome, National Institutes of Health

Turner Syndrome Support Society, UK

Chromosomal Problems Discovered through Prenatal Diagnosis: Turner Syndrome, (.pdf) PacNorGG spanish version

Turner Syndrome, Continuing Education Credit (CME) online for health care providers, requires registration (free) Medscape, posted December 23, 2002

Triple X Syndrome

Triple-X Syndrome (XXX) - see Triple X Females. An Orientation, Turner Center For Information, Counselling, and Research

Triplo-X Syndrome, written by student, summary of articles, graphics,description of cell division, contacts

Chromosomal Problems Discovered through Prenatal Diagnosis: 47, XXX Syndrome, (.pdf) PacNorGG spanish version

 
Tetrasomy X / Pentasomy X
 
Tetrasomy X / Pentasomy X Support Group
1402 Governor House Circle, Wilmington, Delaware 19809
Phone: 302.764.3924
E-mail: cyndibradley@hotmail.com
Also contact:  Kim Jenny, MS, Genetic Counselor, Cardiology, Children's Hospital of Philadelphia:
kjenny@erols.com or jenny@email.chop.edu
On-line support group: tetra-X-list-subscribe@egroups.com, kjenny@erols.com, semi-annual newsletter
Subscribe through: www.egroups.com/group/tetrasomy_x

XYY Syndrome

XYY Syndrome - see XYY Syndrome: An Orientation, Turner Center For Information, Counselling, and Research

Resource for genetic counselors (link with family of son diagnosed prenatally 1997,  contact: kathleen.delp@spectrum-health.org)

Chromosomal Problems Discovered through Prenatal Diagnosis: XYY Syndrome, (.pdf) PacNorGG spanish version

References for sex chromosome anomalies (SCA):

  1. Linden MG, Bender BG, Robinson A. "Intrauterine diagnosis of sex chromosome aneuploidy." OB GYN, 87:468-475, 1996. A comprehensive article about sex chromosome anomalies. Useful for professionals and families.
  2. Robinson A. et. al. "Clinical manifestations of sex chromosome anomalies." Comprehensive Therapy, 16:3-10, 1990. Useful article for professionals and families.
  3. Linden, M, BBender, RHarmon, DMzarek, ARobinson, "47,XXX: What is the prognosis?",  Pediatrics 82(4):619-630, 1988
  4. Milunsky A. Genetic Disorders and the Fetus, see chapter "Prenatal Diagnosis of Sex Chromosome Abnormalities", 3rd edition, 1992, to be revised 1998.
  5. Robinson and Linden. Clinical Genetics Handbook, chapter on sex chromosome anomalies.
  6. Linden, Bender and Robinson. "Sex chromosome tetrasomy and pentasomy." Pediatrics, 66: 672-682, 1995. Disorders involving more than one extra X and/or Y chromosome.
  7. Parents of 47,XXX and 47,XYY fetuses or children may find articles (1) (2) above helpful.
  8. Triple-X Females: An Orientation" by Johannes Nielsen, from The Turner Center, Blamunkevej 6, DK-8240 Russkov or Risskov, Denmark. A 20-page booklet written for families. see also, Triple-X web site: www.aaa.dk/turner/ENGELSK/Trien.htm

The Internet has become a forum for many SCA individuals to express their experiences publicly. Some of these are quite negative. Parents should be wary of the incompleteness of what they read over the Internet.  A genetic counselor or clinical geneticist can help interpret and clarify information

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Other cytogenetic resources:

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To locate a genetic counselor, or clinical geneticist:

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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