{"id":322,"date":"2022-01-24T13:46:15","date_gmt":"2022-01-24T13:46:15","guid":{"rendered":"https:\/\/countrylanding-dev-001.azurewebsites.net\/au\/?page_id=322"},"modified":"2023-08-10T19:52:36","modified_gmt":"2023-08-10T19:52:36","slug":"associacoes-de-pacientes","status":"publish","type":"page","link":"https:\/\/www.biomarin.com\/pt-br\/associacoes-de-pacientes\/","title":{"rendered":"Associa\u00e7\u00f5es de Pacientes"},"content":{"rendered":"
\n
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\n\t\t\t \t\t\t\t Suporte da comunidade<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t

Associa\u00e7\u00f5es de Pacientes\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

Abaixo, voc\u00ea encontra uma lista de organiza\u00e7\u00f5es que apoiam as comunidades que buscamos tratar.<\/p>\n\t\t\t\t\t\t\t\t\n

\n <\/p>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n\n

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Acondroplasia (ACH)\n\n<\/h4>\n \n

Associa\u00e7\u00e3o Nanismo Brasil (ANNABRA)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Brasil<\/p>\n

E-mail:<\/strong>
\ncontato@annabra.org<\/a>
\ncontatoannabra@gmail.com<\/a><\/p>\n

Telefone: <\/strong>
\n(21) 9641 65196<\/a><\/p>\n

– Instituto Nacional de Nanismo (INN)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Brasil<\/p>\n

E-mail:<\/strong>
\ncomunicacao@inn.org.br<\/a><\/p>\n

Telefone: <\/strong>
\n(62) 99990-2223<\/a><\/p>\n

– Instituto Amor e Carinho (IAC)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Brasil<\/p>\n

E-mail:<\/strong>
\ncontato@institutoamorecarinho.org<\/a><\/p>\n

Telefone: <\/strong>
\n(19) 3264-5057<\/a><\/p>\n

– Atopicos Brasil<\/h5>\n

Local de Atua\u00e7\u00e3o: MG e Brasil<\/p>\n

E-mail:<\/strong>
\ncontato@atopicosbrasil.org.br<\/a><\/p>\n

Telefone: <\/strong>
\n(31) 99525-4752<\/a><\/p>\n

– Associa\u00e7\u00e3o Cearense dos Portadores de Doen\u00e7as Raras – AC<\/h5>\n

Local de Atua\u00e7\u00e3o: CE e Regi\u00e3o Nordeste<\/p>\n

E-mail:<\/strong>
\ncontato@acepdr.com.br<\/a><\/p>\n

Telefone: <\/strong>
\n(85) 3121-2624<\/a><\/p>\n

 <\/p>\n <\/div>\n<\/div>\n\n

\n
\n

Lipofuscinose Ceroide Neuronal tipo 2 (CLN2)\n<\/h4>\n \n

– Associa\u00e7\u00e3o Norte de S\u00edndrome de Williams e Outras Doen\u00e7as Raras (ANSW & ODR)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Regi\u00e3o Norte<\/p>\n

E-mail:
\n<\/strong>assoc.norteraras@gmail.com<\/a><\/p>\n

Telefone:
\n<\/strong>(91)98222-3080<\/a><\/p>\n

– Associa\u00e7\u00e3o Niemann-Pick e Batten Brasil (ANPB)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Brasil<\/p>\n

E-mail:
\n<\/strong>rejanemsmachado@gmail.com<\/a><\/p>\n

Telefone:
\n<\/strong>(41)99625-4809<\/a><\/p>\n <\/div>\n<\/div>\n\n

\n
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Mucopolissacaridoses (MPS)\n<\/h4>\n \n

– Associa\u00e7\u00e3o Baiana dos Familiares e Amigos dos Portadores de Mucopolissacaridoses (ABAMPS)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Bahia<\/p>\n

E-mail:<\/strong>
\nabamps.raras@outlook.com<\/a><\/p>\n

Telefone:<\/strong>
\n(71) 98894-7403<\/a><\/p>\n

– Associa\u00e7\u00e3o De Apoio Aos Cuidadores E Pessoas Com Doen\u00e7as Raras (Cuidados Raros)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Rio de Janeiro<\/p>\n

E-mail:<\/strong>
\ncontato@cuidadosraros.org.br<\/a><\/p>\n

Telefone:<\/strong>
\n(21) 99364-0187<\/a><\/p>\n

– Associa\u00e7\u00e3o Maranhense de Doen\u00e7as Gen\u00e9ticas e Raras (AMAGeR)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Maranh\u00e3o<\/p>\n

E-mail:<\/strong>
\ncontato.amager.ma@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(99) 99125-9367<\/a><\/p>\n

– Associa\u00e7\u00e3o Maria Vit\u00f3ria de Doen\u00e7as Raras e Cr\u00f4nicas (AMAVI)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Minas Gerais<\/p>\n

E-mail:<\/strong>
\nmiriamammps@yahoo.com.br<\/a><\/p>\n

Telefone:<\/strong>
\n(37) 3525-2530<\/a><\/p>\n

– Associa\u00e7\u00e3o Sergipana de Pessoas com Doen\u00e7as Raras (ASPDR)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Sergipe<\/p>\n

E-mail:<\/strong>
\nasmps.central@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(79) 99990-0777<\/a><\/p>\n

– Associa\u00e7\u00e3o Mineira de Mucopolissacaridoes (AMMPS)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Minas Gerais<\/p>\n

E-mail:<\/strong>
\nmiriamammps@yahoo.com.br<\/a><\/p>\n

Telefone:<\/strong>
\n(37) 3525-2530<\/a><\/p>\n <\/div>\n<\/div>\n\n

\n
\n

Fenilceton\u00faria (PKU)\n<\/h4>\n \n

– Associa\u00e7\u00e3o Amiga dos Fenilceton\u00faricos do Brasil (SAFE)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Brasil<\/p>\n

E-mail:<\/strong>
\nsafe@safe.org.br<\/a><\/p>\n

Telefone:<\/strong>
\n(11) 99925-5627<\/a><\/p>\n

– M\u00e3es Metab\u00f3licas (MM)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Brasil<\/p>\n

E-mail:<\/strong>
\nmaesmetabolicas@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(21) 98458-0000<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Doen\u00e7as Raras<\/h2>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
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\n
\n \n
– Instituto Vidas Raras (IVR)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: S\u00e3o Paulo e Brasil<\/p>\n

E-mail:<\/strong>
\nacesso@vidasraras.org.br<\/a><\/p>\n

Telefone:<\/strong>
\n0800 006 7898<\/a><\/p>\n

– Federa\u00e7\u00e3o Brasileira das Associa\u00e7\u00f5es de Doen\u00e7as Raras (FEBRARARAS)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Brasil<\/p>\n

E-mail:<\/strong>
\nfebrararas@febrararas.org<\/a><\/p>\n

Telefone:<\/strong>
\n(61) 3246-9284<\/a>
\n(61) 98201-3885<\/a><\/p>\n

– Federa\u00e7\u00e3o de Doen\u00e7as Raras Norte, Nordeste e Centro-Oeste (FEDRANN)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Para\u00edba, Regi\u00e3o Norte e Nordeste\/Brasil<\/p>\n

E-mail:<\/strong>
\nfedrannpb@gmail.com<\/a>
\nfedrannoficial@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(83) 99611-6595 <\/a>
\n(85) 99615-0078<\/a><\/p>\n

– Associa\u00e7\u00e3o Brasileira de Doen\u00e7as Gen\u00e9ticas (ACDG)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Cear\u00e1<\/p>\n

E-mail:<\/strong>
\nacdgmonica@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(85) 3254-4260<\/a><\/p>\n

– Associa\u00e7\u00e3o Catarinense de Doen\u00e7as Raras (ACDR & ACAMU)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Santa Catarina<\/p>\n

E-mail:<\/strong>
\ncontato@acdracamu.org<\/a><\/p>\n

Telefone:<\/strong>
\n(48) 99960-5045<\/a><\/p>\n

– Associa\u00e7\u00e3o de Doen\u00e7a Raras do Rio Grande do Norte (AMPSRN)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Rio Grande do Norte<\/p>\n

E-mail:<\/strong>
\namps.rn.2010@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(84) 99181-2775<\/a><\/p>\n

– Associa\u00e7\u00e3o Norte de S\u00edndrome de Williams e Outras Doen\u00e7as Raras (ANSW & ODR)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Regi\u00e3o Norte<\/p>\n

E-mail:<\/strong>
\nassoc.norteraras@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(91)98222-3080<\/a><\/p>\n

– Casa Hunter<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: S\u00e3o Paulo e Brasil<\/p>\n

E-mail:<\/strong>
\ncasahunter@casahunter.org.br<\/a><\/p>\n

Telefone:<\/strong>
\n(11) 99162-3737<\/a><\/p>\n

– Instituto Atlas Biosocial (IABS)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Rio Grande do Sul e Paran\u00e1<\/p>\n

E-mail:<\/strong>
\ninstitutoatlasbiosocial@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(54) 99909-4754<\/a><\/p>\n

– Instituto Breno Bloise (IBB)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Pernambuco<\/p>\n

E-mail:<\/strong>
\ninstitutobrenobloise@gmail.com<\/a><\/p>\n

Telefone:<\/strong>
\n(81) 99106-3226<\/a><\/p>\n

– Associa\u00e7\u00e3o Paraibana de Doen\u00e7as Raras (ASPADOR)<\/h5>\n

\u00c1rea de Atua\u00e7\u00e3o: Pernambuco<\/p>\n

E-mail:<\/strong>
\ninstitutobrenobloise@gmail.com<\/span><\/a><\/p>\n

Telefone:<\/strong>
\n(83) 3235-8956<\/a> \/\u00a0\u00a0<\/span>(83) 9867-8665<\/a><\/span><\/p>\n

 <\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Nota:\u00a0Estas listagens s\u00e3o fornecidas pela BioMarin como informa\u00e7\u00f5es adicionais aos pacientes, seus familiares e provedores de cuidado \u00e0 sa\u00fade. Os contatos e a \u00e1rea de atua\u00e7\u00e3o s\u00e3o mantidos pelas organiza\u00e7\u00f5es listadas. A BioMarin n\u00e3o endossa nenhuma organiza\u00e7\u00e3o em particular ou teor contido em seus websites.<\/p>\n\t\t\t\t\t\t \t\t\t\t\t <\/div>\n\t\t\t\t\t <\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

Nosso compromisso \u00e9 impactar positivamente a vida da pessoas com doen\u00e7as raras, n\u00e3o apenas por meio de medicamentos inovadores, mas tamb\u00e9m unindo for\u00e7as com as associa\u00e7\u00f5es que apoiam as comunidades que buscamos tratar. Abaixo, voc\u00ea encontra uma lista de associa\u00e7\u00f5es de pacientes e organiza\u00e7\u00f5es sem fins lucrativos no Brasil, as quais fornecem educa\u00e7\u00e3o, recursos e servi\u00e7os de suporte para acompanhar os pacientes em sua jornada na conviv\u00eancia com as doen\u00e7as raras.<\/p>\n","protected":false},"author":9,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-322","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nAssocia\u00e7\u00f5es de Pacientes em Doen\u00e7as Gen\u00e9ticas Raras<\/title>\n<meta name=\"description\" content=\"Nosso compromisso \u00e9 impactar positivamente a vida da pessoas com doen\u00e7as raras, n\u00e3o apenas por meio de medicamentos inovadores, mas tamb\u00e9m unindo for\u00e7as com as associa\u00e7\u00f5es que apoiam as comunidades que buscamos tratar. 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