{"id":2317,"date":"2018-10-29T13:58:32","date_gmt":"2018-10-29T18:58:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2317"},"modified":"2018-10-29T13:58:32","modified_gmt":"2018-10-29T18:58:32","slug":"organization-lgmd2i-research-fund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/lgmd2i\/2018\/10\/29\/organization-lgmd2i-research-fund\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: Fundo de Investiga\u00e7\u00e3o LGMD2i"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOME DA ORGANIZA\u00c7\u00c3O<\/strong>: Fundo de investiga\u00e7\u00e3o LGMD2i<\/p>\n

S\u00cdTIO WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 http:\/\/www.lgmd2ifund.org\/<\/a><\/u><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> https:\/\/www.facebook.com\/jeanpierre.laurent.58173<\/a><\/p>\n

EM QUE SUBTIPO DE LGMD SE CONCENTRA A SUA ORGANIZA\u00c7\u00c3O:\u00a0 <\/strong><\/p>\n

Concentramo-nos exclusivamente no LGMD2I<\/p>\n

SE NOS CONCENTRARMOS NUM SUBTIPO, EXISTE UM REGISTO E COMO PODEM OS DOENTES ADERIR? <\/strong><\/p>\n

Temos conhecimento de um registo: o Registo Global FKRP (https:\/\/www.fkrp-registry.org\/). Embora esteja sediado no Reino Unido, \u00e9 um registo internacional, adaptado \u00e0 natureza das doen\u00e7as raras. A LGMD2I \u00e9 uma doen\u00e7a muito rara, o que significa que o n\u00famero de pessoas afectadas por ela \u00e9 pequeno do ponto de vista dos criadores de medicamentos. Uma vez que os estudos cl\u00ednicos avan\u00e7ados requerem muitos participantes, a exist\u00eancia de um registo global ajudar\u00e1 a identificar um n\u00famero significativo de potenciais participantes e aumentar\u00e1 as hip\u00f3teses de sucesso na inscri\u00e7\u00e3o em ensaios t\u00e3o necess\u00e1rios. Apoi\u00e1mos financeiramente este registo durante muitos anos e est\u00e1 a tornar-se um grande trunfo para a comunidade LGMD2I.<\/p>\n

A sua organiza\u00e7\u00e3o \u00e9 uma organiza\u00e7\u00e3o sem fins lucrativos? Em caso afirmativo, de que tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Sim, somos uma funda\u00e7\u00e3o privada sem fins lucrativos.<\/p>\n

O QUE INSPIROU A CRIA\u00c7\u00c3O DA SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n

As pessoas com LGMD2I t\u00eam sido influentes na defini\u00e7\u00e3o do nosso foco e miss\u00e3o.<\/p>\n

qual \u00e9 a miss\u00e3o da sua organiza\u00e7\u00e3o?<\/strong><\/p>\n

Encontrar uma cura e ajudar as pessoas com 2I a manter a sua qualidade de vida.<\/p>\n

QUE SERVI\u00c7OS PRESTA A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

N\u00e3o prestamos servi\u00e7os. Financiamos a investiga\u00e7\u00e3o e ajudamos a p\u00f4r as pessoas em contacto com informa\u00e7\u00f5es sobre a doen\u00e7a e os cuidados m\u00e9dicos.<\/p>\n

DE QUE \u00c9 QUE A SUA ORGANIZA\u00c7\u00c3O MAIS SE ORGULHA:<\/strong><\/p>\n

Financi\u00e1mos o in\u00edcio de programas em todos os principais campos terap\u00eauticos (terapia gen\u00e9tica, c\u00e9lulas estaminais, ...), diagn\u00f3sticos e ferramentas de investiga\u00e7\u00e3o (modelo de rato, registo, ...). Gra\u00e7as ao nosso envolvimento, o n\u00famero de investigadores em LGMD2I tem crescido de forma constante em todas as regi\u00f5es do mundo. Foi importante criar uma certa massa cr\u00edtica de grupos de investiga\u00e7\u00e3o; agora \u00e9 importante mant\u00ea-la...<\/p>\n

O que quer que o mundo saiba sobre a SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n

Financiamos todos os projectos de investiga\u00e7\u00e3o da LGMD2I que nos possam aproximar de uma cura e apoiamos o diagn\u00f3stico em grande escala. Acreditamos que o tratamento\/cura adequado para a 2I ser\u00e1 uma combina\u00e7\u00e3o de modalidades que ir\u00e3o corrigir o gene defeituoso e ajudar a reverter os danos causados aos m\u00fasculos. Qualquer laborat\u00f3rio que possua conhecimentos de investiga\u00e7\u00e3o e tecnologias que possam ser aplicadas no desenvolvimento de um tratamento para a LGMD2I deve contactar-nos.<\/p>\n

COMO \u00c9 QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO \u00c0 SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

Qualquer pessoa que tenha informa\u00e7\u00f5es sobre a doen\u00e7a ou que esteja interessada em encontrar uma cura \u00e9 bem-vinda a entrar em contacto connosco.<\/p>\n

QUAL \u00c9 A MELHOR FORMA DE CONTACTAR A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

Para mais informa\u00e7\u00f5es, contactar: Dr. Jean-Pierre Laurent, respons\u00e1vel pelo programa, por correio eletr\u00f3nico: jpl@lgmd2ifund.org<\/a><\/p>\n

\u00a0<\/strong><\/p>","protected":false},"excerpt":{"rendered":"

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