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Malattie Rare Sardegna - Centro di riferimento
Centro di Coordinamento Regionale per le Malattie Rare
Ospedale Pediatrico Microcitemico A. Cao
Clinica Pediatrica e Malattie Rare
Via Jenner - 09121 Cagliari
cell. 366 9220528 - tel. 070 52965609

Associazioni:

Se non trovi l'associazione che cerchi, visita anche la pagina Associazioni in via di costituzione


cerca patologia
aaa
A.N.F. Associazione Neuro Fibromatosi . Onlus

Ruggero Maria Scampuddu



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0521 771457


aaa
Associazione Italiana Mastocitosi

Patrizia Marcis



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3386305747


aaa
LIRH Sardegna ETS



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800 388 330


Acondroplasia
Associazione Acondroplasia - Insieme per crescere

Virgilio Camedda



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Angiodisplasie
Associazione Italiana Angiodisplasia ed Emangiomi Infantili-ILA

M.Barbara Setzu



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Angioedema Ereditario
Associazione volontaria per la lotta, lo studio e la terapia dell'Angioedema Ereditario - onlus

PIETRO MANTOVANO



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025472671 - 3400640177


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Atassia di Friedreich
Comitato Rudi Onlus Gofar

Caterina Cappai



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Atassia e Atrofia Muscolare e neurodiversità
Associazione Acaa Charcot Atassia e Atrofia Muscolare e neurodiversità in Sardegna

Maria Meloni



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348 517 9141


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Charchot-Marie-Tooth
A.I.C.M.T. sezione Sardegna (Associazione Italiana Charchot-Marie-Tooth sezione Sardegna)

Simone Musu


3284324965 (Anna Maria) - 3201736210 (Serena) - 3284662284 (Rita)


Delezione Cromosoma 22
Associazione Italiana delezione del Cromosoma 22 ONLUS

Antonino Secchi



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Difetti ereditari della coagulazione
Associazione Sarda Coagulopatici Emorragici

Nicola Spinelli



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Distrofia Muscolare
UILDM (Unione Italiana Lotta alla Distrofia Muscolare) - sezione di Sassari "Andrea Cao" - ONLUS - Sassari via Pozzomaggiore, 14

Dott.ssa Gigliola Serra


3358249431 - 3284558558


Distrofia Muscolare di Duchenne e Becker
Associazione Parent Project Onlus Centro Ascolto Duchenne Sardegna



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Epidermolisi Bollosa
DEBRA Italia Onlus (Epidermolisi Bollosa)

Valeria Manca



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Febbri periodiche
AIFP Associazione Italiana Febbri Periodiche

Arianna Porcu



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Labiopalatoschisi
Associazione Labiopalatoschisi della Sardegna

Nicola Melis



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Lupus Eritematoso Sistemico
Associazione Lupus Eritematoso Sistemico

Federica Floris



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Malattia di Bechet
Associazione Italiana Sindrome e Malattia di Behcet-SIMBA

Monica Muntoni



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Malattia di Huntington
Huntington Onlus Cagliari – sede territoriale

Alessia Zurru



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Malattie da accumulo di glicoproteine
ISMRD- The International Advocates for Glycoprotein Storage Diseases (malattie da accumulo di glicoproteine)

Roberto Piras



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Malattie Metaboliche
Cometa sardegna

Silvio Peddizzi



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Malattie Polmonari Interstiziali, Sarcoidosi e Fibrosi Polmonare Idiopatica
A.Ma.P.I. - Giulia ed Ester Molia ONLUS

Monica Atzei


Malattie Rare
UNIAMO Federazione Italiana Malattie Rare

Massimo Rodriguez



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Malformazioni di Chiari 1 e Siringomielia
AISMAC - Associazione Italiana Siringomielia e Arnold Chiari

Ref. Sardegna: Stefania Ippoliotti



340.0032964


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Neurofibromatosi
A.N.A.N.a.s. Onlus - Associazione Nazionale Aiuto per la Neurofibromatosi, amicizia e solidarietà onlus

Cristina Casti


3202748222


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Paralisi Cerebrali Infantili
Associazione Bambini Cerebrolesi Sardegna

Anna Maria Cadeddu



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Paraparesi spastica ereditaria
Associazione italiana A.I.Vi.P.S. - ONLUS

Anna Maria Cadeddu


3929825622


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Porpora Trombotica Trombocitopenica – Sindrome di Moschcowitz
Associazione Nazionale Porpora Trombotica Trombocitopenica - Sindrome di Moschcowitz (ANPTT Onlus)

Massimo Chiaramonte


Rubinstein-Taybi
RTS "una vita speciale" ONLUS

Emanuela Usai


3482505730


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Sclerodermia ed altre Malattie Rare
As.Ma.Ra Onlus Sclerodermia ed altre Malattie Rare “Elisabetta Giuffrè”

Maria Pia Sozio



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06 8546164 - Fax 06 85389884 - Cell. 339 1348170 - 366 1111432


Sclerosi Tuberosa
A.S.T. Associazione Sclerosi Tuberosa

Efisio Bachis



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Sindrome di Angelman
OR.s.a. Organizzazione Sindrome di Angelman

Mariangela Palmas



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Sindrome da x-fragile
Associazione Italiana Sindrome X-Fragile Onlus

Gabriella Manca


327-2347403


Sindrome di Alport
Associazione Sindrome di Alport (A.S.A.L.)



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Sindrome di Beckwith-Wiedemann
AIBWS Associazione Italiana Sindrome di Beckwith-Wiedemann

Tommaso Deiana



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Sindrome di CHARGE
Associazione Amici di Carlo

Sonia Desini



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Sindrome di Crisponi
Associazione Sindrome di Crisponi

Paola Sedda



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Sindrome di Down
Centro Down Onlus cagliari

Sandro Deiana



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Sindrome di klinefelter
Associazione Sindrome di klinefelter Italiana Sicilia - Askis Onlus

Francesco Tolu


Cell. 3497819421 - Tel. 079/228285 - Fax: 079/228283


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Sindrome di Marfan
A.S.M. Onlus Associazione Sindrome di Marfan

Giulia Santandrea



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Sindrome di Pallister-Killian
Associazione Italiana Sindrome di Pallister-Killian

Franco Figus



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Sindrome di Rett
Associazione Italiana Sindrome di Rett

Enrico Deplano



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Sindrome di Williams
AISW Associazione Italiana Sindrome di Williams - Onlus

Massimo Rodriguez



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Sindrome di Wilson
ASSOCIAZIONE NAZIONALE MALATTIA DI WILSON o.n.l.us.


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SINDROMI PTEN CORRELATE - PHTS
PTEN Italia Associazione Italiana per la Lotta alle PHTS

Federico Marras e Roberta Pisano


ptenitalia@gmail.com


Spina Bifida
Associazione Spina Bifida Idrocefalo Sardegna ONLUS

Mario Orgiana



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Sprue celiaca
Associazione Italiana Celiachia Sardegna



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Talassemia
Associazione Regionale Sarda per la lotta alla talassemia

Giorgio Vargiu



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Talassemia
Associazione Talassos

Ivano Argiolas



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TELEANGECTASIA EMORRAGICA EREDITARIA
HHT onlus

Giorgia Grussu



Tumori oncoematologici
Associazione sarda genitori oncoematologia pediatrica

Bruna Moro



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