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la gemma rara nel 2009

Il Consiglio Direttivo de la gemma rara e il servizio di Genetica Medica dell’Azienda Ospedaliera Universitaria Ospedale di Circolo e F. Macchi di Varese, hanno organizzato la 1° edizione dell’incontro “Riunione Famiglie – Servizio di Genetica Medica”.
Tale iniziativa ha lo scopo di illustrare, alle famiglie dei pazienti di Varese, l’attività svolta da la gemma rara e i progetti che verranno realizzati nel corso dell’anno 2009.

Durante la riunione ampio spazio è stato dedicato alle famiglie che desideravano condividere con il personale medico e dell’associazione, le proprie esperienze personali riguardanti il percorso diagnostico.
Nel corso dell#8217;incontro è stato eletto il rappresentante delle famiglie, il Sig. Giuseppe Lamanna che avrà il compito di raccogliere eventuali richieste, idee e suggerimenti nati dalla condivisione dei bisogni con persone affette da malattie genetiche.

“Riunione Famiglie – Servizio di Genetica Medica” sabato 7 marzo 2009
sala riunioni della parrocchia Padre Massimiliano Kolbe – Viale Aguggiari 141, Varese.

la gemma rara ha organizzato un’iniziativa culturale per la raccolta di fondi a favore di:

  • Un progetto di ricerca sulla sindrome da delezione 9q34 in collaborazione con l’Università di Nijmegen (Prof.ssa Kleefstra T.) allo scopo di stabilire migliori correlazioni tra genotipo e fenotipo della sindrome e effettuare studi di espressione del gene EHMT1.
  • Stipula di un contratto con un giovane medico desideroso di dedicarsi allo studio della genetica medica.

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