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multiplehereditaryexostoses.com
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multiplehereditaryexostoses.org
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Exostoses Multiplas Hereditárias
Ola a todos os blogueres. O meu nome é Zana tenho 36 anos e desde os 4 anos de idade que vivo com uma doença rara Exostoses Múltiplas Hereditárias (MHE - multiple hereditary exostoses). Uma doença classificada como muito rara, 1 em cada 50.000 nascimentos. A ideia de construir este blog foi baseada na minha necessidade de procurar informação sobre a minha doena, tratamentos etc. Ora nos últimos dois anos tenho recebido alguns emails de pessoas afectadas pela mesma doença e com as duvidas que eu tinha.
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