‘‡î•ñ |
|
‘“àƒTƒCƒg |
ŠCŠOƒTƒCƒg |
ƒKƒCƒhƒ‰ƒCƒ“Cˆã—Ãî•ñ |
|
w•ŸŽƒ
‚ÆáŠQŽÒŽx‰‡î•ñ‚Ì‘–ÚŽŸx |
National
Organization for Rare Disorders (NORD) |
|
|
u‚³‚ë‚ñvŠ³ŽÒáŠQŽÒ
’c‘Ì^Ž©•ƒOƒ‹[ƒvƒKƒCƒh |
Family
Village |
|
|
“ï•aî•ñƒZƒ“ƒ^[ |
The Alliance of Genetic Support Groups |
|
|
‚¢‚Å‚ñƒlƒbƒgiŠe’n‚̈â“`‘Š’kŽ{Ýî•ñj |
Special
Child Magazine |
|
|
”’BáŠQŽ¾Š³ƒŠƒXƒgiby ‘—§¸__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•aî•ñƒZƒ“ƒ^[ |
Rare Disease Day (‹HŽ¾Š³‚Ì“új |
|
|
ƒAƒ“ƒŠ[ƒVƒ… |
|
|
|
“ú–{‘½‘ÙŽx‰‡‹¦‰ï |
|
|
õF‘ÌŠÖ˜AŽ¾Š³ (Œ»ÝXV‚ð’âŽ~‚µ‚Ä‚¢‚Ü‚·B‰¢B‚ÌŠ³ŽÒî•ñƒTƒCƒg@UNIQUE‚ð‚¨Š©‚ß‚µ‚Ü‚·j |
ƒ_ƒEƒ“ÇŒóŒQ |
|
|
“ú–{ƒ_ƒEƒ“ǃlƒbƒgƒ[ƒN |
National Down syndrome
Congress |
|
|
‚ç‚邲@ƒOƒ‹[ƒv‚½‚ñ‚Û‚Û@ƒGƒ“ƒWƒFƒ‹@iˆ¤’m
Τj |
The Down Syndrome Reseach
Foundation@ |
|
|
ƒsƒ…ƒA@iŠò
•ŒŒ§j |
Down Syndrome
International@ |
|
1”ÔõF‘Ì |
|
|
1p36Œ‡Ž¸ÇŒóŒQ‰Æ‘°‰ï |
1p36 .org(1p36Œ‡Ž¸j |
¡@GR |
|
Œú˜JÈ1p36Œ‡Ž¸ÇŒóŒQŒ¤‹†”Ç |
|
|
2”ÔõF‘Ì |
|
|
|
2q23.1Œ‡Ž¸ÇŒóŒQƒTƒ|[ƒgƒOƒ‹[ƒv |
|
4”ÔõF‘Ì |
|
|
ƒtƒH[ƒV[ƒYƒ“i‚S‚|ÇŒóŒQj |
4p- Support Gruop
(Wolf-Hirschhorn Syndrome) |
|
5”ÔõF‘Ì |
|
|
ƒJƒ‚ƒ~[ƒ‹‚̉ï@(5p-ÇŒóŒQj |
Cri Du Chat Support
Group of Australia |
¡ |
|
‰E‚Ì“ú–{
Œê–ói“Œ‹žˆã‰È‘åŠwˆâ“`Œ¤‹†Žºj |
Cri-du-Chat Syndrome
Support Group |
|
|
|
5p- Society |
|
‚W”ÔõF‘Ì |
|
|
|
|
|
‚X”ÔõF‘Ì@ |
|
|
|
Chromosome 9p Netwo‚’‚‹(9p-) |
|
|
|
Trisomy
9 International Parent Support |
|
‚P‚O”ÔõF‘Ì |
|
|
|
Distal
trisomy 10q families |
|
‚P‚P”ÔõF‘Ì |
|
|
|
11q Network i‰¢Bj@ |
£ |
|
|
11q
Neti•Ä‘j |
|
|
|
Int'l 11;22
translocation Network |
|
‚P‚Q”ÔõF‘Ì |
|
|
ƒpƒŠƒXƒ^[@ƒLƒŠƒAƒ“ÇŒóŒQ |
Pallister Killian Syndrome (12p tetrasomy)@ |
|
@ |
@ |
PKS_Support |
|
‚P‚R•‚P‚WƒgƒŠƒ\ƒ~[ |
|
|
‚P‚RƒgƒŠƒ\ƒ~[‚ÌŽq‹Ÿ‚ðŽx‰‡‚·‚ée‚̉ï |
SOFT :Support
Organization for Trisomy 18, 13 and Related Disorders |
|
15‚‘11-q13d•¡ÇŒóŒQ ( syndrome)Aidic(15)ÇŒóŒQ |
|
|
|
|
|
‚P‚U”ÔõF‘Ì |
|
|
|
Disorders of
Chromosome 16 |
|
‚P‚W”ÔõF‘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”ÔõF‘Ì |
|
@ |
‚Q‚Q‚‘‚P‚PD‚QŒ‡Ž¸ÇŒóŒQF‚Q‚QHeart
Club |
Chromosome 22
Central |
|
@ |
22q‹ßˆÊ•”ƒeƒgƒ‰ƒ\ƒ~[iCat EyeÇŒóŒQj¨ |
Cat Eye Syndrome |
|
@ |
@ |
Ring 22@@@Anneau 22 |
|
@ |
22q13Œ‡Ž¸ÇŒóŒQƒTƒ|[ƒgƒOƒ‹[ƒvi•Äj¨ |
22q13 Deletion Syndrome Support Gruop |
|
ƒ^[ƒi[ÇŒóŒQAƒgƒŠƒvƒ‹XÇŒóŒQAX‰ßèÇŒóŒQ |
|
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|
ƒgƒŠƒvƒ‹X—«
iTriple X female)
|
|
|
|
Tripro-X Syndrome
|
|
|
@ |
Tetra/Pentasomy
X Support Group |
|
ƒNƒ‰ƒCƒ“ƒtƒFƒ‹ƒ^[ÇŒóŒQAXYYÇŒóŒQAYõF‘ÌŠÖ˜A‚ÌÇŒóŒQ |
|
|
KS Family JAPAN |
Kleinfelter Suppot
Group |
|
|
|
Klinfelter syndrome Association |
|
|
XYYÇŒóŒQ¨ |
XYY Syndrome, XYY Parents: A support site, XYY Males:An Orientation |
|
|
|
|
|
|
XXXXYÇŒóŒQ¨
|
XXXXY Syndrome.com
|
|
¬‡«‘BˆÙŒ`¬Ç |
|
|
@ |
Mixed gonadal dysgenesis
support group |
|
‚»‚Ì‘¼‚ÌõF‘ÌŽ¾Š³A‹HõF‘Ì‹NˆöŽ¾Š³ |
|
|
‚e‚n‚t‚q|‚k‚d‚`‚e@‚b‚k‚n‚u‚d‚qi“ú–{j |
CDOF Chromosome
Deletion Outreach |
|
|
|
UNIQUE: Rare
chromosome disorders |
|
|
|
@“¯ã@‘SõF‘̈Ùíǃpƒ“ƒtƒŒƒbƒg |
|
|
|
Support
Groups for Chromosomal Conditions |
|
|
•”•ªƒgƒŠƒ\ƒ~[¨
|
What
is a partial trisomy? |
|
ŠeŽí‚ÌÇŒóŒQAæ“V«Ž¾Š³ |
ÇŒóŒQ ( syndrome) |
|
|
|
|
|
ƒAƒCƒJƒ‹ƒfƒBÇŒóŒQiAicardi syndromej |
|
|
|
Aicardi Syndrome
Asscciation |
|
|
|
A.A.L Syndrome d'Aicardi (French) |
|
ƒAƒy[ƒ‹ÇŒóŒQ (Apert Syndrome) |
|
|
|
Teeter's Homepage |
|
ƒAƒ~ƒƒCƒh@ƒ|ƒŠƒjƒ…[ƒƒpƒ`[iFAP) |
|
|
‚½‚ñ‚ۂۂ̉ï |
|
|
ƒAƒ‰ƒW[ƒ‹ÇŒóŒQ (Alagille Syndrome) |
|
|
|
The Alagille Syndrome Alliance |
|
EECÇŒóŒQ (EEC Syndrome) |
|
|
EECÇŒóŒQ@Œú˜JÈŒ¤‹†Ž–‹Æ
|
|
|
ƒAƒ“ƒWƒFƒ‹ƒ}ƒ“ÇŒóŒQ (Angelman Syndrome) |
|
|
ƒGƒ“ƒWƒFƒ‹‚̉ï
|
Angelman Syndrome
Foundation |
DYSCERNE |
ƒEƒBƒŠƒAƒ€ƒYÇŒóŒQ (Williams syndrome) |
GR,DYSSCERNE
|
|
ƒEƒBƒŠƒAƒ€ƒY@ƒm[ƒg |
Williams Syndrome
Association |
|
ƒG[ƒ‰ƒXƒ_ƒ“ƒƒXÇŒóŒQ (Ehlers Danlos syndrome) |
|
|
|
|
|
MECP2d•¡ÇŒóŒQ |
|
|
MECP2d•¡d•¡ÇŒóŒQŠ³ŽÒ‰Æ‘°‰ï |
MECP2 duplication.com
|
|
ƒIƒsƒbƒcÇŒóŒQ (Opitz
Syndrome)@^@ƒIƒsƒbƒcG/BBB@ÇŒóŒQAFGÇŒóŒQ |
|
|
|
The Opitz Family Network |
|
ƒJƒuƒLÇŒóŒQ@iKabuki syndrome) |
|
|
‰Ì•‘ŠêÇŒóŒQƒlƒbƒgƒ[
ƒNi“ú–{j |
Kabuki Syndrome
Network |
DYSCERNE
|
|
|
Kabuki Syndrome by PFOND |
|
ƒLƒƒƒbƒgƒAƒCÇŒóŒQi”L‚Ì–ÚÇŒóŒQj (Cat Eye
Syndrome) |
|
|
|
Cat Eye
Syndrome
Foundation |
|
‹ØƒWƒXƒgƒƒtƒB[ |
|
|
‹ØƒWƒXƒgƒƒtƒB[‹¦‰ï |
Muscular dystrophy association |
|
ƒNƒŠ[ƒtƒXƒgƒ‰ÇŒóŒQ (Kleefstra Syndrome) |
GR |
|
|
kleefstrasyndrome.org |
|
ƒR[ƒGƒ“ÇŒóŒQi@Cohen Syndrome ) |
GR |
|
|
Contact
a Family : Cohen Syndrome
|
|
ƒRƒXƒeƒÇŒóŒQ@(Costello syndrome) |
GR œ |
|
|
Costello
KIDS |
|
ƒRƒtƒBƒ“ƒVƒŠƒXÇŒóŒQ (Coffin Siris syndrome) |
|
|
|
|
|
ƒRƒtƒBƒ“ƒ[ƒŠ[ÇŒóŒQ (Coffin Lowry
syndrome) |
GR |
|
|
The Coffin-Lowry
Syndrome Foundation |
|
ƒRƒ‹ƒlƒŠƒA@ƒf@ƒ‰ƒ“ƒQÇŒóŒQ (Cornelia de
Lange Syndrome) |
GR |
|
ƒRƒ‹ƒlƒŠƒAEƒfE
ƒ‰ƒ“ƒQÇŒóŒQ‚Ìe‚̉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¿“œ½‡¬ˆÙíÇj |
|
|
|
CDG
Family Network |
|
F‘fŽ¸’²Ç |
|
|
F‘fŽ¸’²Ç How to |
Incontinentia Pigmenti International Foundation |
GR GRJ |
|
|
It's Facebook: above |
|
ƒVƒgƒ‹ƒŠƒ“ŒŒÇ |
|
|
ƒVƒgƒ‹ƒŠƒ“ŒŒÇ‚̉ï |
|
GR |
ƒWƒ…ƒx[ƒ‹ÇŒóŒQiJoubert Syndrome) |
|
|
ƒWƒ…ƒx[ƒ‹Eƒlƒbƒg |
Joubert Syndrome Foundation |
|
ƒXƒ^[ƒWEƒEƒF[ƒo[ÇŒóŒQ |
|
|
|
The Sturge Weber Foundation |
|
ƒXƒ~ƒX@ƒ}ƒQƒjƒXiSmith-MagenisjÇŒóŒQ |
|
|
‚r‚l‚r‚Ì‚±‚Ç‚à‚ð‚à‚‰Ƒ°‚̉ï
|
PRISM |
GR |
ƒXƒ~ƒX@ƒŒƒ€ƒŠ@ƒIƒsƒbƒcÇŒóŒQ@(
Smith-Lemli-Opitz Syndrome ) |
|
|
|
SLOS
Network |
|
‚RMÇŒóŒQ@i3 M syndrome, Three M Syndrome) |
GR |
|
|
Jasmine's Journey (‚ ‚銳Ž™‚ÌWebsite) |
|
æ“V«‘½”ŠÖßSkÇ |
|
|
|
AMCSupport.org |
|
ƒ\ƒgƒXÇŒóŒQ@iSotos Syndrome, ”]«‹lÇj |
|
|
|
Sotos Syndrome
Support Association |
|
|
|
Sotos Syndrome Support Association of Canada |
|
ƒ`ƒƒ[ƒW ÇŒóŒQ@iCHARGE Syndrome) |
|
|
CHARGEÇŒóŒQ@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”ƒBƒbƒcÇŒóŒQiDubowitz ÇŒóŒQj |
|
|
|
Dubowitz Syndrome Support |
|
ƒgƒŠ[ƒ`ƒƒ[ƒRƒŠƒ“ƒYÇŒóŒQi Treacher Collins
Syndromej |
|
|
|
Treacher Collins
Foundation |
|
|
|
Reflections on
Treacher Collins Syndrome - Amie's Home |
|
ƒjƒRƒ‰ƒCƒfƒXEƒoƒ‰ƒCƒcƒ@[ÇŒóŒQ ( syndrome) |
|
|
|
|
|
ƒk[ƒiƒ“ÇŒóŒQ (Noonan Syndrome) |
|
|
ƒk[ƒiƒ“ÇŒóŒQ‚ðŽ‚•ƒ‚ƕꂽ‚¿ |
Noonan syndrome
support group |
DYSCERNE
|
|
ƒk[ƒiƒ“ÇŒóŒQ@Œú˜JÈŒ¤‹†Ž–‹Æ |
Noonan Syndrome Testing(ˆâ“`Žqf’f‚̈ēàj |
|
|
|
Rasopathy Network, RASopathies Net |
|
œŒ`¬•s
‘SÇ (Osteogenesis Imperfecta) |
|
|
Network OI |
Ostergenesis Imperfecta
Foundation |
|
VATERÇŒóŒQ |
|
|
VATERÇŒóŒQ@@Œú˜JÈŒ¤‹†Ž–‹Æ |
|
|
ƒnƒ‰[ƒ}ƒ“EƒXƒgƒ‰ƒCƒtÇŒóŒQ |
|
|
—BŒ‹ |
|
|
ƒnƒ“ƒ`ƒ“ƒgƒ“•a
|
|
|
“ú–{ƒnƒ“ƒ`ƒ“ƒgƒ“•aƒlƒbƒgƒ[ƒN
|
|
|
ÇŒóŒQ ( syndrome) |
|
|
|
|
|
ƒvƒ‰ƒ_[ƒEƒBƒŠÇŒóŒQ (Prader Willi
Syndrome) |
|
|
’|‚ÌŽq‚̉ï
|
Prader-Willi Syndrome
Association (USA) |
|
|
“ú–{ƒvƒ‰ƒ_[ƒEƒBƒŠÇŒóŒQ‹¦‰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 |
|
|
BWSe‚̉ï |
Beckwith-Wiedemann
Support Network |
GR |
ƒ|[ƒ‰ƒ“ƒhÇŒóŒQAƒ|[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“œÇiMucopolysaccharide and related diseases) |
|
|
|
Canadian Society of MPS |
|
ƒ‚ƒƒbƒgƒEƒBƒ‹ƒ\ƒ“ÇŒóŒQ@( Mowat Wilson Syndrome ) |
|
|
ƒ‚ƒƒbƒgEƒEƒBƒ‹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“ACFCAƒRƒXƒeƒÇŒóŒQ@ƒŒƒbƒNƒŠƒ“ƒOƒnƒEƒ[ƒ“•aj |
|
|
|
RASopathies Net |
|
ƒ‰ƒbƒZƒ‹@ƒVƒ‹ƒo[@ÇŒóŒQ@iRussel Silver
Syndrome. Silver Russel Syndrome j |
|
|
ƒVƒ‹ƒo[ƒ‰ƒbƒZƒ‹ÇŒóŒQƒlƒbƒgƒ[ƒN |
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“|ƒeƒCƒriRubinstein-TaybijÇŒóŒQ |
|
|
Rubinstein-TaybiÇŒóŒQ@Œú˜JÈŒ¤‹† |
Rubinstein-Taybi
Syndrome (USA) |
|
|
‚±‚·‚à‚· |
Rubinstein-Taybi Syndrome
(UK) |
|
ƒŒƒbƒgÇŒóŒQ@iRett Syndrome) |
|
|
“ú–{ƒŒƒbƒgÇŒóŒQ‹¦‰ï |
International Rett
Syndrome Association |
|
|
NPO–@l ƒŒƒbƒgÇŒóŒQŽx‰‡‹@\ |
|
|
ƒƒrƒmƒEÇŒóŒQ@iRobinow Syndrome) |
œQ
|
|
|
Robinow Syndrome Foundation |
|
½œ“ªŠWˆÙŒ`¬Ç
|
|
|
|
Cleidocranial
Dysplasia@@FACES‚æ‚è
|
|
_ŒoüˆÛŽîÇ(von Recklinghausen •aAƒŒƒbƒNƒŠƒ“ƒOƒnƒEƒ[ƒ“•aj |
|
|
|
Neurofibromatosis, Inc |
GR@eMed@@@@@œ |
|
|
Understanding NF1 |
|
‘½”«”X–Et |
|
|
‘½”«”X–Età’c“ú–{Žx•” |
|
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“³Œ`¬Ç |
|
|
‚i‚`‚o‚`i“ú–{“³Œ`¬Ç‹¦‰ï j |
AchondroplasiaFHelp
& Infomation |
|
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‚‚‚µ‚̉ï
|
|
|
|
‚‚‚µ‚ñ‚Ú
|
|
|
’Ü•GŠWœÇŒóŒQiƒlƒCƒ‹ƒpƒeƒ‰ÇŒóŒQF@Nail-Pattela
Syndromej |
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Xeroderma
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