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‘“àƒTƒCƒg ŠCŠOƒTƒCƒg ƒKƒCƒhƒ‰ƒCƒ“Cˆã—Ïî•ñ

w•ŸŽƒ ‚ƏáŠQŽÒŽx‰‡î•ñ‚Ì‘–ÚŽŸx National Organization for Rare Disorders (NORD)

u‚³‚ë‚ñvŠ³ŽÒáŠQŽÒ ’c‘́^Ž©•ƒOƒ‹[ƒvƒKƒCƒh Family Village

“ï•aî•ñƒZƒ“ƒ^[ The Alliance of Genetic Support Groups

‚¢‚Å‚ñƒlƒbƒgiŠe’n‚̈â“`‘Š’kŽ{Ýî•ñj Special Child Magazine

”­’BáŠQŽ¾Š³ƒŠƒXƒgiby ‘—§¸__ŒoƒZƒ“ƒ^[j
FACES: TheNational Craniofacial Association
“ª•”Šç–ÊŒ`‘Ԃ̕ω»‚𔺂¤Ž¾Š³‚Ì‘‡ƒTƒCƒg

“ï•aŠÖ˜A’c‘̘A—æ ThirdAid.com Patient to Patient Comunity
  ¬Ž™–«“Á’莾•aî•ñƒZƒ“ƒ^[ Rare Disease Day (‹H­Ž¾Š³‚Ì“új  
õF‘ÌŠÖ˜AŽ¾Š³
ƒ_ƒEƒ“ÇŒóŒQ
“ú–{ƒ_ƒEƒ“Çƒlƒbƒgƒ[ƒN National Down syndrome Congress
‚ç‚邲@ƒOƒ‹[ƒv‚½‚ñ‚ۂہ@ƒGƒ“ƒWƒFƒ‹@iˆ¤’m Œ§j The Down Syndrome Reseach Foundation@
ƒsƒ…ƒA@iŠò •ŒŒ§j Down Syndrome International@
1”ԐõF‘Ì
1p36Œ‡Ž¸ÇŒóŒQ‰Æ‘°‰ï 1p36 .org(1p36Œ‡Ž¸j ¡@GR
  Œú˜JÈ1p36Œ‡Ž¸ÇŒóŒQŒ¤‹†”Ç    
2”ԐõF‘Ì
2q23.1Œ‡Ž¸ÇŒóŒQƒTƒ|[ƒgƒOƒ‹[ƒv
4”ԐõF‘Ì
ƒtƒH[ƒV[ƒYƒ“i‚S‚|ÇŒóŒQj 4p- Support Gruop (Wolf-Hirschhorn Syndrome)
5”ԐõF‘Ì
ƒJƒ‚ƒ~[ƒ‹‚̉ï@(5p-ÇŒóŒQj Cri Du Chat Support Group of Australia ¡
‰E‚Ì“ú–{ Œê–ói“Œ‹žˆã‰È‘åŠwˆâ“`Œ¤‹†Žºj Cri-du-Chat Syndrome Support Group

5p- Society
‚W”ԐõF‘Ì


‚X”ԐõF‘́@

Chromosome 9p Netwo‚’‚‹(9p-)

Trisomy 9 International Parent Support
‚P‚O”ԐõF‘Ì

Distal trisomy 10q families
‚P‚P”ԐõF‘Ì

11q Network i‰¢Bj@ £

11q Neti•Ä‘j

Int'l 11;22 translocation Network
‚P‚Q”ԐõF‘Ì
ƒpƒŠƒXƒ^[@ƒLƒŠƒAƒ“ÇŒóŒQ Pallister Killian Syndrome (12p tetrasomy)@
@ @ PKS_Support
‚P‚R•‚P‚WƒgƒŠƒ\ƒ~[
‚P‚RƒgƒŠƒ\ƒ~[‚ÌŽq‹Ÿ‚ðŽx‰‡‚·‚ée‚̉ï SOFT :Support Organization for Trisomy 18, 13 and Related Disorders
‚P‚U”ԐõF‘Ì

Disorders of Chromosome 16
‚P‚W”ԐõF‘Ì
‚P‚WƒgƒŠƒ\ƒ~[‚̉ï The Chromosome 18 Registry and Research Society
Tetrasomy 18p@i18pƒeƒgƒ‰ƒ\ƒ~[j
  18q ƒ‚ƒmƒ\ƒ~[@@@ UNIQUE‚Ì18q-ƒŠ[ƒtƒŒƒbƒg  
‚Q‚Q”ԐõF‘Ì
@ ‚Q‚Q‚‘‚P‚PD‚QŒ‡Ž¸ÇŒóŒQF‚Q‚QHeart Club Chromosome 22 Central
@ 22q‹ßˆÊ•”ƒeƒgƒ‰ƒ\ƒ~[iCat EyeÇŒóŒQj¨ Cat Eye Syndrome
@ @ Ring 22@@@Anneau 22
@ 22q13Œ‡Ž¸ÇŒóŒQƒTƒ|[ƒgƒOƒ‹[ƒvi•Äj¨ 22q13 Deletion Syndrome Support Gruop
ƒ^[ƒi[ÇŒóŒQAƒgƒŠƒvƒ‹XÇŒóŒQAX‰ßèÇŒóŒQ
ƒgƒŠƒvƒ‹X—« iTriple X female)


Tripro-X Syndrome

@ Tetra/Pentasomy X Support Group
ƒNƒ‰ƒCƒ“ƒtƒFƒ‹ƒ^[ÇŒóŒQAXYYÇŒóŒQAYõF‘ÌŠÖ˜A‚̏njóŒQ
KS Family JAPAN Kleinfelter Suppot Group

Understanding KFS@ EAAKSIS
XYYÇŒóŒQ¨ XYY Syndrome, XYY Parents: A support site, XYY Males:An Orientation
XXXXYÇŒóŒQ¨
XXXXY Syndrome.com

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@ Mixed gonadal dysgenesis support group
‚»‚Ì‘¼‚̐õF‘ÌŽ¾Š³A‹H­õF‘Ì‹NˆöŽ¾Š³
‚e‚n‚t‚q|‚k‚d‚`‚e@‚b‚k‚n‚u‚d‚qi“ú–{j CDOF Chromosome Deletion Outreach

UNIQUE: Rare chromosome disorders
@“¯ã@‘SõF‘ُ̈íÇƒpƒ“ƒtƒŒƒbƒg

Support Groups for Chromosomal Conditions
•”•ªƒgƒŠƒ\ƒ~[¨
What is a partial trisomy?
ŠeŽí‚̏njóŒQAæ“V«Ž¾Š³
ƒAƒCƒJƒ‹ƒfƒBÇŒóŒQiAicardi syndromej


Aicardi Syndrome Asscciation


A.A.L Syndrome d'Aicardi (French)
ƒAƒy[ƒ‹ÇŒóŒQ (Apert Syndrome)


Teeter's Homepage
ƒAƒ~ƒƒCƒh@ƒ|ƒŠƒjƒ…[ƒƒpƒ`[iFAP)
‚½‚ñ‚ۂۂ̉ï
ƒAƒ‰ƒW[ƒ‹ÇŒóŒQ (Alagille Syndrome)
The Alagille Syndrome Alliance
EECÇŒóŒQ (EEC Syndrome)
EECÇŒóŒQ@Œú˜JÈŒ¤‹†Ž–‹Æ
ƒAƒ“ƒWƒFƒ‹ƒ}ƒ“ÇŒóŒQ (Angelman Syndrome)
ƒGƒ“ƒWƒFƒ‹‚̉ï Angelman Syndrome Foundation DYSCERNE
ƒEƒBƒŠƒAƒ€ƒYÇŒóŒQ (Williams syndrome) GR,DYSSCERNE

ƒEƒBƒŠƒAƒ€ƒY@ƒm[ƒg Williams Syndrome Association
ƒG[ƒ‰ƒXƒ_ƒ“ƒƒXÇŒóŒQ (Ehlers Danlos syndrome)

“ú–{ƒG[ƒ‰ƒXƒ_ƒ“ƒƒXÇŒóŒQ‹¦‰ï Ehlers Danlos National Foundation
ƒIƒsƒbƒcÇŒóŒQ (Opitz Syndrome)@^@ƒIƒsƒbƒcG/BBB@ÇŒóŒQAFGÇŒóŒQ


The Opitz Family Network
ƒJƒuƒLÇŒóŒQ@iKabuki syndrome)

‰Ì•‘ŠêÇŒóŒQƒlƒbƒgƒ[ ƒNi“ú–{j Kabuki Syndrome Network DYSCERNE
    Kabuki Syndrome by PFOND  
ƒLƒƒƒbƒgƒAƒCÇŒóŒQi”L‚̖ڏnjóŒQj (Cat Eye Syndrome)

Cat Eye Syndrome Foundation
‹ØƒWƒXƒgƒƒtƒB[
‹ØƒWƒXƒgƒƒtƒB[‹¦‰ï Muscular dystrophy association
ƒNƒŠ[ƒtƒXƒgƒ‰ÇŒóŒQ (Kleefstra Syndrome) GR
kleefstrasyndrome.org
ƒR[ƒGƒ“ÇŒóŒQi@Cohen Syndrome ) GR

Contact a Family : Cohen Syndrome

ƒRƒXƒeƒÇŒóŒQ@(Costello syndrome) GR œ

Costello KIDS
ƒRƒtƒBƒ“ƒ[ƒŠ[ÇŒóŒQ (Coffin Lowry syndrome) GR
The Coffin-Lowry Syndrome Foundation
ƒRƒ‹ƒlƒŠƒA@ƒf@ƒ‰ƒ“ƒQÇŒóŒQ (Cornelia de Lange Syndrome) GR
ƒRƒ‹ƒlƒŠƒAEƒfE ƒ‰ƒ“ƒQÇŒóŒQ‚̐e‚̉ï CdLS-USA Foundation
CdLS World
Medical Home Portal CdLS CdLS Online Support Group
CFC ÇŒóŒQ@iCFC@ Cardio-Facio-Cutaneus Syndrome) GR œ
CFC International
     RASopathies Net  
CGD@i“œƒ^ƒ“ƒpƒNŽ¿“œ½‡¬ˆÙíÇj
CDG Family Network
F‘fŽ¸’²Ç
F‘fŽ¸’²Ç How to Incontinentia Pigmenti International Foundation GR GRJ
    It's Facebook: above  
ƒVƒgƒ‹ƒŠƒ“ŒŒÇ
ƒVƒgƒ‹ƒŠƒ“ŒŒÇ‚̉ï GR
ƒWƒ…ƒx[ƒ‹ÇŒóŒQiJoubert Syndrome)
ƒWƒ…ƒx[ƒ‹Eƒlƒbƒg Joubert Syndrome Foundation
ƒXƒ^[ƒWEƒEƒF[ƒo[ÇŒóŒQ
The Sturge Weber Foundation
ƒXƒ~ƒX@ƒ}ƒQƒjƒXiSmith-MagenisjÇŒóŒQ
‚r‚l‚r‚Ì‚±‚Ç‚à‚ð‚à‚‰Ƒ°‚̉ï
PRISM GR
ƒXƒ~ƒX@ƒŒƒ€ƒŠ@ƒIƒsƒbƒcÇŒóŒQ@( Smith-Lemli-Opitz Syndrome )

SLOS Network
 ‚RMÇŒóŒQ@i3 M syndrome, Three M Syndrome) GR
     Jasmine's Journey (‚ ‚銳Ž™‚ÌWebsite)  
æ“V«‘½”­ŠÖßSkÇ
AMCSupport.org
ƒ\ƒgƒXÇŒóŒQ@iSotos Syndrome, ”]«‹lÇj

Sotos Syndrome Support Association
Sotos Syndrome Support Association of Canada
ƒ`ƒƒ[ƒW ÇŒóŒQ@iCHARGE Syndrome)
CHARGEÇŒóŒQ@Œú¶˜J“­ÈŒ¤‹†Ž–‹Æ CHARGE Syndrome Foundation
CHARGE‚̉ï
ƒeƒCƒUƒbƒNƒX•a@iTay-Sachs Disease )


NTSAD: National Tay-Sachs and Allied Disease Association

ƒfƒ…ƒ{ƒ”ƒBƒbƒcÇŒóŒQiDubowitz ÇŒóŒQj

Dubowitz Syndrome Support
ƒgƒŠ[ƒ`ƒƒ[ƒRƒŠƒ“ƒYÇŒóŒQi Treacher Collins Syndromej

Treacher Collins Foundation

Reflections on Treacher Collins Syndrome - Amie's Home
ƒk[ƒiƒ“ÇŒóŒQ (Noonan Syndrome)
ƒk[ƒiƒ“ÇŒóŒQ‚ðŽ‚Â•ƒ‚ƕꂽ‚¿ Noonan syndrome support group DYSCERNE
ƒk[ƒiƒ“ÇŒóŒQ@Œú˜JÈŒ¤‹†Ž–‹Æ Noonan Syndrome Testing(ˆâ“`Žqf’f‚̈ēàj
    Rasopathy Network, RASopathies Net  
œŒ`¬•s ‘SÇ (Osteogenesis Imperfecta)
Network OI Ostergenesis Imperfecta Foundation
VATERÇŒóŒQ
VATERÇŒóŒQ@@Œú˜JÈŒ¤‹†Ž–‹Æ
ƒnƒ‰[ƒ}ƒ“EƒXƒgƒ‰ƒCƒtÇŒóŒQ
—BŒ‹
ƒnƒ“ƒ`ƒ“ƒgƒ“•a

“ú–{ƒnƒ“ƒ`ƒ“ƒgƒ“•aƒlƒbƒgƒ[ƒN


ƒvƒ‰ƒ_[ƒEƒBƒŠÇŒóŒQ (Prader Willi Syndrome)
’|‚ÌŽq‚̉ï
Prader-Willi Syndrome Association (USA)
“ú–{ƒvƒ‰ƒ_[ƒEƒBƒŠÇŒóŒQ‹¦‰ï(PWSA-Japan) IPWSO (International PWS Organization)
ŠÖ“ŒPWSƒPƒAƒMƒo[ƒY@ƒlƒbƒgƒ[ƒN
@@ @
ƒtƒŠ[ƒ}ƒ“@ƒVƒFƒ‹ƒhƒ“ÇŒóŒQ (Freeman Sheldon Syndrome)
Freeman-Sheldon Parent Support Group @
Freeman Sheldon Syndrome
Freeman Sheldon Syndrome NCA
 ƒtƒ[ƒeƒBƒ“ƒOƒn[ƒo[@ÇŒóŒQ@iFlaoting Harbor Syndrome)  
     Floating Harbor Syndrome Support Group  
ƒxƒbƒNƒEƒBƒY@ƒ”ƒB[ƒhƒ}ƒ“ÇŒóŒQ@Beckwith Wiedmann Syndrome
BWSe‚̉ï Beckwith-Wiedemann Support Network GR
ƒ|[ƒ‰ƒ“ƒhÇŒóŒQAƒ|[ƒ‰ƒ“ƒhŠïŒ`@Poland Syndrome
Poland Syndrome.com  GR
ƒ~ƒgƒRƒ“ƒhƒŠƒA•a
MCM‰Æ‘°‚̉ï
Macrocephaly-Cutis Marmorata Telangiectatica Congenita
Macrocephaly-cmtc.com
ƒ}ƒ‹ƒtƒ@ƒ“ÇŒóŒQ (Marfan Syndrome)
ƒ}ƒ‹ƒtƒ@ƒ“ƒlƒbƒgƒ[ƒNƒWƒƒƒpƒ“ National Marfan Foundation
“ú–{ƒ}ƒ‹ƒtƒ@ƒ“‹¦‰ï Marfan association UK
ƒ€ƒR‘½“œÇiMucopolysaccharide and related diseases)
Canadian Society of MPS
ƒ‚ƒƒbƒgƒEƒBƒ‹ƒ\ƒ“ÇŒóŒQ@( Mowat Wilson Syndrome )
ƒ‚ƒƒbƒgƒEƒBƒ‹ƒ\ƒ“ÇŒóŒQ‚Ì—‰ð‚Ì‚½‚ß‚É Mowat Wilson.com
ƒ„ƒ“ƒOƒVƒ“ƒvƒ\ƒ“ÇŒóŒQ@(Young-Simpson Syndrome )
Œú¶˜J“­ÈŒ¤‹†Ž–‹Æ@Œ¤‹†”Ç
ƒ‰ƒ]ƒpƒ`[@Rasopathies Net (ƒk[ƒiƒ“ACFCAƒRƒXƒeƒÇŒóŒQ@ƒŒƒbƒNƒŠƒ“ƒOƒnƒEƒ[ƒ“•aj  
    RASopathies Net  
ƒ‰ƒbƒZƒ‹@ƒVƒ‹ƒo[@ÇŒóŒQ@iRussel Silver Syndrome. Silver Russel Syndrome j

Russel‚Œ Silver syndrome (in MAGIC )

RSS-Support
ƒ‰ƒ“ƒK[ƒMƒfƒIƒ“ÇŒóŒQ@i Langer-Giedeon Syndrome, Trichorhinopharangeal Syndrome j

Langer-Giedion Syndrome Association

Langer-Giedion Syndrome-HomePage

Trichorhinophalangeal Syndrome Support Group
ƒ‹ƒrƒ“ƒXƒ^ƒCƒ“|ƒeƒCƒriRubinstein-TaybijÇŒóŒQ
Rubinstein-TaybiÇŒóŒQ@Œú˜JÈŒ¤‹† Rubinstein-Taybi Syndrome (USA)
‚±‚·‚à‚· Rubinstein-Taybi Syndrome (UK)
ƒŒƒbƒgÇŒóŒQ@iRett Syndrome)
“ú–{ƒŒƒbƒgÇŒóŒQ‹¦‰ï International Rett Syndrome Association
   NPO–@l ƒŒƒbƒgÇŒóŒQŽx‰‡‹@\    
ƒƒrƒmƒEÇŒóŒQ@iRobinow Syndrome) œQ
Robinow Syndrome Foundation
½œ“ªŠWˆÙŒ`¬Ç


Cleidocranial Dysplasia@@FACES‚æ‚è

_ŒoüˆÛŽîÇ(von Recklinghausen •aAƒŒƒbƒNƒŠƒ“ƒOƒnƒEƒ[ƒ“•aj
Neurofibromatosis, Inc GR@eMed@@@@@œ
Understanding NF1
‘½”­«”X–Et
‘½”­«”X–Età’c“ú–{Žx•”
“–³Œ`¬Ç
‚i‚`‚o‚`i“ú–{“–³Œ`¬Ç‹¦‰ï j AchondroplasiaFHelp & Infomation
‚‚­‚µ‚̉ï


‚‚­‚µ‚ñ‚Ú


’Ü•GŠWœÇŒóŒQiƒlƒCƒ‹ƒpƒeƒ‰ÇŒóŒQF@Nail-Pattela Syndromej
’Ü•GŠWœÇŒóŒQƒTƒ|[ƒgƒy[ƒW

–³’É–³Š¾Ç
–³’É–³Š¾Ç‚Ì‰ï iTomorrow)

22q11.2Œ‡Ž¸ÇŒóŒQ
‚Q‚QHeart Club 22q11 deletion Syndrome
GR
Ò‘‹ØˆÞkÇ
SMAiÒ‘«‹ØˆÞkÇj‰Æ‘° ‚̉ï

Œ‹ß«d‰»Ç
‚s‚r‚‚΂³‚̉ï@ Tuberous Sclerosis Alliance
@ Medline Plus: Tuberous Sclerosis
…“ªÇ

“ú–{…“ªÇ‹¦‰ï

‘S‘O”]–EÇ

“VŽg‚Ì‚Â ‚΂³

ÆŽã‚wÇŒóŒQ


FRAXA GR


National Fragile X Foundation
F‘f«Š£”çÇ

XPe‚̉ï@‚Ó‚ê‚Á‚­‚é Xeroderma Pigmentosum Society


Welcome To Children Of The Moon (Xeroderma pigmentosum)
æ“V«‹›—Øá


Ichthyosis Information
’áƒtƒHƒXƒtƒ@ƒ^[ƒ[Ç
’áƒtƒHƒXƒtƒ@ƒ^[ƒ[Ç‚̉ï
ƒƒEÇŒóŒQ@iLowe syndrome)


Lowe Syndrome Association
ŠŠ”]Ç@(Lissencephaly)


Lissencephaly Network
Ž©•ÂÇŠÖ˜A

ƒAƒXƒyEƒGƒ‹ƒf‚̉ï Autism Family Doctorsi“ú–{‚̃TƒCƒg ‚Å‚·j


“ú–{Ž©•ÂÇ‹¦‰ï
Developmental Disabilities: Resources for Healthcare Providers

‰Æ‘°«Žîᇊ֘A

‘å’°ƒ|ƒŠƒ|[ƒVƒXŠ³ŽÒ—F‚̉ï


‚»‚Ì‘¼As­A“ÁŽê–@l‚È‚Ç
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@“ï•aŒ¤‹†‚Ö‚Ì‹´“n‚µƒvƒƒWƒFƒNƒg

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ƒgƒbƒv ƒy[ƒW‚Ö–ß‚éìŽÒ