Groups for specific chromosomes (in Europe).
More contacts: General Groups

         Please send a mail if you have a new link for this overview.

Chromosome 1

• 1p36 Deletion

  • Message board

  • Leaflet Unique

• 1q Duplications, Leaflet Unique

• 1q4 Deletions, Leaflet Unique

• Supernumerary Ring Chromosome 1, Leaflet Unique

Chromosome 2

• 2q32 Deletions and Microdeletions, Leaflet Unique

• 2q37 Deletions, Leaflet Unique

• Ring 2, Leaflet Unique

Chromosome 3

• 3p25 Deletions, Leaflet Unique
• 3q Deletions and Microdeletions, Leaflet Unique
• Cayli's site, Cayli's story and interstitial deletion of chromosome 3 at 3p26.3.
• Yahoo Group for chromosome 3 disorders

Chromosome 4

• Wolf-Hirschhorn (4p-) Syndrome, a German page - with English text too and links to other (European) websites. Added the Guestbook of the first European meeting organised by the Dutch WHS-group, October 2002.(If you are not able to read a  pdf-file, please go to Acrobat for a free download.)
  • Dutch: Het Nederlandse oudernetwerk voor Wolf-Hirschhorn syndroom (deletie chromosoom 4p, 4p-) organiseerde in oktober 2002 haar eerste Europese bijeenkomst. Lees het Guestbook. (Kunt u geen pdf-file lezen? Hier kunt u een gratis download krijgen.) Verder hebben ouders een eigen mailinglist: Whs-nl@yahoogroups.com. Ook Dr. Wiebe Braam geef informatie over dit syndroom.
• 4p Duplications, Leaflet Unique
• Families with a deletion on 4q can (4q-)find leaflets on Unique's website  and a yahoogroup

Chromosome 5

• The English group for Cri du chat has many European links and information about this syndrome. Cri du chat is a deletion of the short arm of chromosome 5 (5p-). There are also Cri du Chat-sites in Denmark, Germany and Italy and Sweden.
• 5q Deletions Including 5q22, Leaflet Unique

Chromosome 6

• Chromosome 6 deletions: Yahoo group for parents, grandparents or any affected by a deletion of chromosome 6
• 6p Deletions, Leaflet Unique
• 6q Deletions, Leaflets Unique

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Chromosome 7

• There are several groups for Williams or Williams-Beuren Syndrome. This a deletion of chromosome 7. Websites in France and Italy can be contacted in English too. In the Netherlands a website has been started too. In the USA you can find: Williams Syndrome Association, Williams Syndrome Foundation.
  • Er zijn verschillende sites over Williams Beuren of Williams syndroom: die van het oudernetwerk, Erwin en Dr. Wiebe Braam. Het gaat hier om een deletie van chromosoom 7.
• 7q Duplications, Leaflet Unique
• 7q36 Deletions, Leaflet Unique

Chromosome 8

• The Yahoo group on chromosome 8 is a support group for parents, family members.
• 8 p Duplications, Leaflet Unique
• 8p Inv Dup Del, Leaflet Unique
• 8p Deletions, Leaflet Unique
• 8q Deletions, Leaflet Unique
• Trisomy 8 Mosaicism, Leaflet Unique

Chromosome 9

• In the USA can be found the Network for 9p- Syndrome.
• 9p Deletions, Leaflet Unique
• 9p24 Deletions, Leaflet Unique
• 9p Duplications, Leaflet Unique
• 9q34.3 Deletions
  • Leaflet Unique
  • Website and discussion forum for families and professionals with an interest in 9q34.3 syndrome (9qstds)
• Trisomy 9 Mosaicism, Leaflet Unique

Chromosome 10

• 10p Deletions, Leaflet Unique
• USA-website for families with a distal trisomy 10q.
• Yahoo group for families with chromosome 10q deletions.  You go to www.yahoo.com, click on groups and then search for 10q deletion.  Anyone can join -- it is an E-mail support group.
• 10q26 Deletions, Leaflet Unique

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Chromosome 11

• The WAGR-syndrome is a deletion of chromosome 11p13. 
• Caroline van Heesewijk is looking for families with a disorder on chromosome 11p. More information via the 11q network.
• Families with disorders on chromosome 11q can find contact at the site of the European Chromosome 11q Network. The most known disorder is Jacobsen Syndrome or terminal deletion chromosome 11q.
  • Leaflets Unique
• The International 11;22 Translocation Network is based in Canada, yet working worldwide.

Chromosome 12

• Pallister Killian, Leaflet Unique

Chromosome 13

• 13q Deletions including RB1, Leaflet Unique
• 13q Deletions Various, Leaflet Unique
• 13q Distal Interstitial Delletions, Leaflet Unique
• Deletions including the end of 13q, Leaflet Unique
• Ring 13, Leaflet Unique

Chromosome 14

• 14q Deletions, Leaflets Unique
• Started in January 2003 in Italy the ring 14 website. Although the site mainly is in Italian, you are welcome to mail in English. At this site links to other information about chromosome 14 will be collected.
  • Ring 14, Leaflet Unique
• UPD 14, Leaflet Unique

Chromosome 15

• People with Angelman Syndrome often miss a part of chromosome 15. Probably 1 of 25.000 are supposed to have this deletion. 
  • Veel kinderen met het Angelman syndroom missen een stukje van chromosoom 15. Er zijn verschillende websites: Angelman werkgroep van de Prader Willi - Angelman Vereniging, informatie van Dr Wiebe Braam en een internationale website.
• Another disorder of chromosome 15 is Prader-Willi Syndrome.
  • Ook het Prader Willi syndroom is verbonden aan chromosoom 15. 
• 15q Deletions, Leaflet Unique
• Duplications of 15q, Leaflet Unique
• Ring 15, Leaflet Unique
• Isodicentric 15 is an inverted duplication of chromosome 15.  
  • You can go to the Ideas network and to the European Yahoo IDIC 15 group. If you want to have more information about European contacts, please contact the moderator.
  • Started April 2008: Invdup15.org, Italian network for Idic 15 families. Idic 15 is called Invdup15 in Italy.
  • Idic 15, Leaflet Unique

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Chromosome 16

• Chromosome 16 is also involved at the Rubinstein-Taybi Syndrome. There is a Dutch network with English explanation.
  • In Nederland is een apart oudernetwerk voor het Rubinstein-Taybi Syndroom. Hierbij is een deel van chromosoom 16 betrokken.
• More disorders on Chromosome 16 can be found at this American website.
• 16p Proximal Deletions, Leaflet Unique
• 16p13 Deletions, Leaflet Unique
• 16p Duplications, Leaflet Unique
• 16q Deletions, Leaflet Unique
• Trisomy 16 Mosaicism, Leaflets Unique

Chromosome 17

• Smith Magenis Syndrome is caused by a deletion of a small band of Chromosome 17 (17p11.2). This USA-website gives good information about this syndrome, and also links to EU-groups, like Sirius, the German Smith-Magenis-Syndrom network.
  • soon: link NL group
  • Achtergrondinformatie is te vinden op de website van Dr. Wiebe Braam. Er is ook een Yahoo groep SMS Nederland
• 17p Duplications, Leaflet Unique
• 17q21.31 Microdeletions, Leaflet Unique
• USA support Group chromosome 17 abnormalities, started February 2008, contact address: familiyofchromosome17disorders@yahoo.com

Chromosome 18

• Contacts and info about disorders on chromosome 18 can be found at the site of The Chromosome 18 Registry & Research Society in the USA.
• Also in the USA: SOFT, support Organization for Trisomy 18, 13 and Related Disorders
  • Een andere naam voor trisomie 18 is Edwards syndroom. Meer informatie op de website van de Nederlandse groep Lotgenoten Trisomie 18.
• Ring 18, Leaflet Unique

Chromosome 19

Chromosome 20

• Information on ring 20 is provided by the international Ring Chromosome 20 Foundation. 
  • Leaflet Unique
• Duplications of 20p Leaflet Unique

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Chromosome 21

• European Down's Syndrome Association (EDSA). A direct link where you can find links to groups in many European countries.
• 21q Deletions, Leaflet Unique
• Ring 21, Leaflet Unique

Chromosome 22

• Chromosome 22 central, this parent support group gives an overview of chromosome 22 related disorders. 
• You can also go to the German network
• VCFS or 22q11-syndrome; Deletion of a small segment of the long arm of Chromosome 22. In Germany and Austria: Kids-22q11
  • Het Oudernetwerk VCF-syndroom geeft op haar website informatie over deze deletie op 22q11. Ook Dr Wiebe Braam gaat in op dit syndroom.
• Contacts for deletion of chromosome 22q13 or Phelan-McDermid Syndrome can be found here: 22q13 Deletion Syndrome Foundation, the German network for chromosome 22 or at Unique to ask for the new leaflet on 22q13.
• 22q13 Deletions, Leaflet Unique
• Ring 22, Leaflet Unique

Chromosomes x and y

• The National Fragile X Foundation, based in the USA, provides a lot of information about this syndrome. There is a very good overview of international Fragile X organisations.
  • Nederlandse Fragiele X Vereniging
  • Associazione Italiana Sindrome X-Fragile Onlus
  • The Fragile X Society UK
  • Spanish Federation of Fragile X Syndrome
• FXTAS: Fragile X-associated Tremor/Ataxia Syndrome
• Information about Triplo x or Triple X syndrome can be found at triple-x
  • Nederlands: Informatie over xxx is te vinden op de Triple X website.
• These websites for Klinefelter syndrome , provide support for chromosome variations 47XXY, 48XXYY, 48XXXY, 49XXXXY, 46XY/47XXY mosiac and other variants: USA Klinefelter syndrome support group; Info from the univ. of Kansas  Klinefelter syndrome resources; and in Germany / Deutschland: http://www.klinefelter.org
  • Voor (aanstaande) ouders en Klinefelters is er de Nederlandse Klinefelter Vereniging (NKV).
• GendersInX is a forum for those who have abnormal genetic sex chromosone such as Klinefelter's Symdrome, Turner's Syndrome, AIS, CAH and 5-ARD. We encourage and support the members there as well as briefly talk about thier genetic conditions. In www.ParentsX.org, the same hold true with the exception that it is geared towards Parents of  an abnormal genetic sexual condition.
• A mutation of a gene at the x-chromosome causes Rett-syndrome. You can find more info at this European website. If it does not function, you can find many interesting links at the German website.
  • Nederlands: Een mutatie van een gen op het x-chromosoom is de oorzaak van het Rett-syndroom. Er is een Nederlandse en een Europese website. Als deze laatste niet werkt, dan kun je ook bij de Duitse website terecht voor veel interessante links. Ook Dr Wiebe Braam gaat in op dit syndroom.
• The Dutch xyy-network has good international links. A site especially for boys and men!
  • Voor jongens en mannen: de xyy contactgroep.
• The 49,xxxxy Syndrome Association and Unique published a very good leaflet about this Syndrome.
• There is a special website for Tetrasomy xxxx.
• Leaflets Unique

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• Angelman Syndrome

C

• Charge syndrome
  • Association Charge (Spain)
  • The Charge Family Support Group (UK)
  • Charge Syndrome Foundation (USA)
  • Dutch Network Charge Syndroom
  • Das Charge Syndrome (German)
• The gene involved in the Cornelia de Lange syndrome was found about 1-1/2 years ago; it is called NIPBL.  At this USA-site you can find links to European sites. Recently started: the Dutch website.
• Cri du Chat Syndrome

D

• Diploid Triploid, Leaflets Unique

F

• FXTAS: Fragile X-associated Tremor/Ataxia Syndrome

• For families in Poland: GEN. 

I

• Idic 15, Isodicentric 15, Invdup 15, go to chromosome 15

J

• Jacobsen Syndrome

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K

• A network with increasing international contacts is the Network Kabuki Syndrome. New: Supporting Aussie Kids with Kabuki Syndrome
• Klinefelter

L

• Leona, German organisation for parents from children with chromosome disorders. (Leona- Verein für Eltern chromosomal geschädigter Kinder e.V.).

M

• The Marfan syndrome is a heritable disorder of the connective tissue.  The gene that is altered in Marfan syndrome has been known for some time, it is called Fibrillin 1. There are good links and information at the US Marfan syndrome association site http://www.marfan.org/nmf/index.jsp. There are many websites about this syndrome, Jeanette Navia's is a very helpful one.
• (Dutch) Mutaties op chromosoom 2q22 kunnen zorgen voor het Mowat Wilson Syndroom. Eind december 2006 startte een Nederlandse MSN-site.

N

• (Dutch) Vanaf februari 2004 heeft de Nederlandse Stiching Noonan Syndroom een eigen website. Noonan syndroom is waarschijnlijk verbonden aan een gen op chromosoom 12. 

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P

• Pallister Killian, Leaflet Unique
• Phelan-McDermid Syndrome
• Prader-Willi Syndrome

R

• Rett Syndrome
• Robertsonian Translocations, Leaflet Unique
• Rubinstein-Taybi Syndrome

S

• Smith-Magenis Syndrome
  • (Dutch) Een afwijkend gen op chromosoom 11 leidt tot het Smith Lemli Opitz syndroom. Meer informatie geeft Dr. Wiebe Braam.
• Sotos Syndrome
  • Dutch: Sotossyndroom

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T

• (Dutch:) Voor en over mensen met een chromosoom-translocatie: de translocatie-website. 
• Triploidy, Leaflets Unique
• Trisomy on line links
• Turner

U

• Unique, Rare Chromosome Disorder Support Group. World-wide, based in UK.
• For families in Denmark: Unique Danmark!

V

• Association Valentin Apac, Chromosome Disorders Support Group in France
• VCFS

W

• WAGR
• Williams
• Williams Beuren
• Wolf-Hirschhorn Syndrome

X

• See Chromosome x

Y

• See Chromosome y

Z

• Zeldzaam, Dutch support group for rare chromosome disorders

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This website started April 06, 2002 by the Chromosome Help-Station
Update: 03-05-2009