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skyrock.com homepage blogs profils chat apps music sources videos gifts log in create your blog search blog profile les maladies rares maladiesorphelines description: tous sur les maladies orphelines de a z... pourkoi ce blog page 67. blog ddi a petit noa ! corage mon grand ! sommaire : http://maladiesorphelines-index.skyblog.com/ laissez vos commentaires de soutiens pour les p'tit bouts!!! et si vous avez un tmoignage me faire parvenir,je mettrais un article avec plaisir!!! gros bisous tous. et bravo tous ces combattant(e)s et leur famille. send a message give a gift follow block awards (7) » more profile maladiesorphelines 25 yo saint-malo (35) france share tweet friends 0 design by maladiesorphelines report abuse info created: 22/07/2007 at 9:55 am updated: 23/08/2010 at 3:00 pm 146,886 visits 24 visits this month 605 articles 6,512 comments 225 friends 239 favourites 7 hearts my archives (605) » more their fans (292) » more sources (239) » more soundtrack of my life play pour un ange timeo timeo le raisin de ma colere add subscribe to my blog! rss ****mon blog**** * * * n o u v e a u b l o g , n o u v e a u t h m e * * * a j o ut e z z m o i s u r fa c e b o o k : m l od y m i l o n c e bl o g a u r a c o m m e t h m e l e s m a l ad i e s r a r e s o u o r p h e l i n e s . d a ns m o n a n c i e n bl o g ( q u i a t s u p p r i m d e p u i s) v o u s a v e z pu v o i r l e p e t i t n o a , d o n t l e s m d e c i n s a v e z d i a g n o s t i q u l e s y n d r o m e d e ja r c h o l e v i n . i l e s t e n f a i t e at t e i n t d ' u n e d ys t r o p h i e t h o r ac i q u e q u i e s t a u s s i u n e m a l a di e r a r e . s i vo u s a v e z u n e m al a d i e r a r e o u s i v o u s a v e z d es p r o c h e s , d e s e n f a n t s o u m me d e s a m i ( e ) s ay a n t u n e m a l a di e r a r e v o u s p ou v e z l a i s s e z de s c o m m e n t a i r e s e n r a c o n t a n t v ot r e p a r c o u r s . et s i v o u s l e s ou h a i t j e p e u x v o u s c o n s a c r e z u n a r t i c l e . b o n n e v i s i t e e t p r e n e z c o n s i e n c e q u e t o u t e s l e s m a l a d i e s l e x i s t e r e l l e m e n t e t q u e d e s m i l l i e r s d e p e r s o n n es s o n t a t t e i n t es [ s o m m a i r e ] << < c l i i k p o r q e j e s o i s b l o g s t a r < < m e r c i 1 | 2,134 | 0 | share comment comment don't forget that insults, racism, etc. are forbidden by skyrock's 'general terms of use' and that you can be identified by your ip address (45.33.85.57) if someone makes a complaint. log in # posted on monday, 23 july 2007 at 6:04 am edited on saturday, 14 august 2010 at 9:16 am qu'est ce qu'une maladie rare ? v oi ci u ne e xp li ca ti on d e s ma la di es r ar es ( o u o r p h el in es ) : pr i s e i n d i v id ue ll em en t, c h a c u n e d e s ma la di e s r a r e s t o u c h e p e u d e p e r s o n n e s e n f r a n c e. c e t t e r a r e t e s t l 'o ri g i n e d e c o n s qu en ce s m di c a l e s e t so ci al es g ra ve s p o u r le s pa ti en ts e t le u r s p ro ch es . l es m al adies ra re s to uc he nt c hac un e pe u de p er so nn es pa r ra pp or t la p opu la ti on g n r al e. e n e ur op e, l e se ui l adm is e st d 'u ne p er so nne a tt ei nt e su r 2 00 0, so it p ou r la f ra nc e m oi ns d e 30 0 00 p ers on ne s at te in te s de la m m e ma la di e. p ar tan t de c et te d f in it ion , ce rt ai ne s ma la di es p eu ve nt tr e ra re s e n fr an ce o u en e ur ope m ai s ne p as a vo ir ce s ta tu t ai ll eu rs . ain si , la l p re e st un e ma la di e ra re e n fra nc e ma is f r qu en te en a fr iq ue c en tr al e. de l a m me m an i re , l 'a no ma li e g n ti qu e l 'o ri gi ne d e la t hal as s mi e (d f au t de sy nt h se d e l' h mo glob i n e) e st ra r e d a ns l e n or d de l' e u ro p e m a is f r q ue n t e a ut o u r d e l a m di t e rr a n e . l e s m al a d ie s o r p he l in e s s o nt l es m al a di e s p o ur l es q ue l l es il n 'e x is t e n i tr a it e m en t n i re c he r c he . l e s d e ux t er m e s " ra r e s" et " or p he l i ne s " s o nt so u v en t ut i li s es in d i ff re m m en t . l a t rs g ra nd e ma jo ri t d e ces m al ad ie s (a u mo in s 80 %) a u ne o ri gi ne g n ti q u e. l es a ut re s so nt p l us r ar e m en t de s mal a d ie s in f e ct i e us e s o u d es m al a d ie s au t o -i m m une s (t r a du i s an t un e ano ma li e du s ys t me i mm u ni ta ir e) . en fi n, l 'o r ig in e de c er ta in es m a l adi es r es te m ys t ri eu se . 0 | 196 | 0 | share comment comment don't forget that insults, racism, etc. are forbidden by skyrock's 'general terms of use' and that you can be identified by your ip address (45.33.85.57) if someone makes a complaint. log in # posted on monday, 23 july 2007 at 12:18 pm edited on sunday, 27 april 2008 at 1:02 pm quelques chiffres l e s ma l ad ie s r ar e s se co mp te n t pa r m il l ie rs , e nt r e 6 et 8 00 0 m al a di es g n t iq ue s s el on l' or g an is a ti on mo nd ia l e de la s a nt . et 5 no uv el l es s o nt d cr it e s ch a qu e se m ai ne da ns la l i tt r a tu re s c ie nt i fi qu e . on es ti m e qu e 4 millions de franais sont touchs de prs ou de loin par ces maladies, 25 millions d'europens et 27 millions d'amricains. si certaines de ces maladies touchent des milliers de personnes, la plupart ne concernent q u 'u ne ce nt a in e d e pa ti e nt s. on p e u t a in s i c i t er t i tr e d 'e x e m pl es : 5 0 0 0 m a l ad es s u i v is po u r d r p a n o c y to s e ; 8 00 0 m a l ad e s a t t e i nt s d e sc l r o s e l at r a l e a m yo t r o p h iq ue ; 5 00 0 6 0 00 m a la d es a t t e in ts de m u co vi sc i d os e ; ma i s se u l e me n t qu el q ue s c a s d e v ie i l l is s e m e n t p r ma t u r c o n n u s o u s l e n om d e p r o g e r i a , d e m a l a d i e d e l ' h o m m e d e p i e r r e ( m y o s i t e o s s i f i a n t e p r o g re s s i ve ) o u d e m a la d i e d e s os d e v er r e (o s t og n se i m pa rf a it e) . 0 | 129 | 0 | share comment comment don't forget that insults, racism, etc. are forbidden by skyrock's 'general terms of use' and that you can be identified by your ip address (45.33.85.57) if someone makes a complaint. log in # posted on monday, 23 july 2007 at 12:30 pm edited on sunday, 27 april 2008 at 1:04 pm 1 la mucoviscidose l a mu c o vi s c id o s e t ai t la m a l a d ie d o n t t a i t a t te i n t n o tr e p e t i t a n g e g r g o r y l em a r ch a l . o n p e n se l u i t r s f o r t , i l n e f a u t p a s o u bl i e r t o ut n o s p et i t s a n ge s qu i so n t l a - ha u t . l a mu c o vi s c id o s e : l a m uc o v is c i do s e e s t u n e m a l ad i e g n t i qu e , c ' e st - -d i r e d u e la p r s e nc e d ' u n g ne d f e c tu e u x. e ll e es t tr a ns m i se s ur l e m o de r c e s si f au t oso m i qu e , c e qu i si g n if i e q u e c e g n e m o di f i d o it tr e pr s en t ch e z l e s d e ux p ar e n ts . po u r d v el o p pe r la mu c o vi s c id o s e, i l f a ut p os s de r de u x g ne s mu t s. i l e x is t e d o n c d e no m br e u x " p or t e ur s sa i n s" , en p ar f a i t e s a n t c a r i l s n ' o n t q u ' u n g n e d f e c t u e u x . l e s f r r e s e t s o e u r s d e s e n f a n t s m a l a d e s s o n t , d a n s d e u x ca s su r tr o i s, p or t e ur s du g n e et p eu v e nt d on c av o i r e u x- m me s un e nf a n t m a la d e s ' i ls po u s en t un c on j o in t po r t eu r lu i au s s i d u g n e. s i t e d e g r go r y l e m ar c h al : h t t p: / / as s o ci a t io n - gr e g or y l em a r ch a l .c o m/ 0 | 128 | 0 | share comment comment don't forget that insults, racism, etc. are forbidden by skyrock's 'general terms of use' and that you can be identified by your ip address (45.33.85.57) if someone makes a complaint. log in # posted on tuesday, 24 july 2007 at 3:33 pm edited on sunday, 04 may 2008 at 12:41 pm les chiffres de la mucovicsidose. v o i c i q u e l q u e s c h i f f r
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Domain Name: skyrock.com
Registry Domain ID: 5523907_DOMAIN_COM-VRSN
Registrar WHOIS Server: whois.gandi.net
Registrar URL: http://www.gandi.net
Updated Date: 2017-03-17T05:21:01Z
Creation Date: 1998-05-13T04:00:00Z
Registrar Registration Expiration Date: 2018-05-12T04:00:00Z
Registrar: GANDI SAS
Registrar IANA ID: 81
Registrar Abuse Contact Email: abuse@support.gandi.net
Registrar Abuse Contact Phone: +33.170377661
Reseller: TELEFUN SAS
Domain Status: clientTransferProhibited http://www.icann.org/epp#clientTransferProhibited
Domain Status:
Domain Status:
Domain Status:
Domain Status:
Registry Registrant ID:
Registrant Name: Nsadmin Vortex
Registrant Organization: VORTEX
Registrant Street: 37bis, rue Greneta
Registrant City: Paris
Registrant State/Province:
Registrant Postal Code: 75002
Registrant Country: FR
Registrant Phone: +33.144888200
Registrant Phone Ext:
Registrant Fax:
Registrant Fax Ext:
Registrant Email: nsadmin@orbus.fr
Registry Admin ID:
Admin Name: TELEFUN SAS
Admin Organization: TELEFUN SAS
Admin Street: 37 bis rue de Greneta
Admin City: Paris
Admin State/Province:
Admin Postal Code: 75002
Admin Country: FR
Admin Phone: +33.144888200
Admin Phone Ext:
Admin Fax:
Admin Fax Ext:
Admin Email: nsadmin@orbus.fr
Registry Tech ID:
Tech Name: TELEFUN SAS
Tech Organization: TELEFUN SAS
Tech Street: 37 bis rue de Greneta
Tech City: Paris
Tech State/Province:
Tech Postal Code: 75002
Tech Country: FR
Tech Phone: +33.144888200
Tech Phone Ext:
Tech Fax:
Tech Fax Ext:
Tech Email: nsadmin@orbus.fr
Name Server: NS1.SKYROCK.NET
Name Server: NS2.SKYROCK.NET
Name Server: NS3.SKYROCK.NET
Name Server: NS5.SKYROCK.NET
Name Server: NS4.SKYROCK.NET
Name Server: NS6.SKYROCK.NET
Name Server:
Name Server:
Name Server:
Name Server:
DNSSEC: Unsigned
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REGISTRAR GANDI SAS
REFERRER http://www.gandi.net
SERVERS
SERVER com.whois-servers.net
ARGS domain =skyrock.com
PORT 43
SERVER whois.gandi.net
ARGS skyrock.com
PORT 43
TYPE domain
RegrInfo
DOMAIN
NAME skyrock.com
NSERVER
NS1.SKYROCK.NET 193.93.124.1
NS2.SKYROCK.NET 193.93.125.1
NS3.SKYROCK.NET 91.203.184.6
NS4.SKYROCK.NET 91.203.185.1
NS5.SKYROCK.NET 193.93.126.118
NS6.SKYROCK.NET 193.93.127.129
STATUS
clientTransferProhibited https://icann.org/epp#clientTransferProhibited
CHANGED 2017-03-17
CREATED 1998-05-13
EXPIRES 2018-05-12
REGISTERED yes
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