The Association is organizing a meeting on the syndrome, to be held in Genoa, Italy, on february 18th 2012 in the Aula magna of Istituto Gaslini.
This meeting, held in collaboration with Istituto Gaslini, Genova and with the support of the Dipartimento ligure di genetica, of the Società neurologica Italiana, of SIMMESN, of Agenzia Regionale per la Salute, and Consulta Nazionale delle malattie Rare,
is meant especially for surgeons and specialists that work with people with Lesch-Nyan syndrome. There is no register in Italy for this condition, nor therapeutic protocols or guidelines.
This meeting is also open to families and care-givers.
The morning session will close with a round table on the subject of the register that does not exist in many european countries, not even in important ones like Italy. It will be chaired by dott. Domenica Taruscio, from the Istituto Superiore di Sanità, responsible for the european platform of registers for rare syndromes.
AGREEMENT WITH THE UNIVERSITY OF SIENA
[ Dec. 15th 2011 ]
AGREEMENT WITH THE UNIVERSITY OF SIENA
The Dean of the University of Siena signed a convention with LND Famiglie Italiane ONLUS: they agreed that the Association will support a research project on pre-clinic trials on the analogues to Immucillina-g as inhibitors to PNP for therapy on Lesch-Nyan patients, with a scholarship and coverage of laboratory equipment expenses.
Preliminary studies in vitro will be conducted by professor Vanna Micheli and professor Annalisa Santucci from the Biotechnologies Department, Biochemistry e Molecular Biology Section of the University.
The Association, together with the department, has already organized the selection of the bursar who will work on the project and has arranged the final interview for february 2012.
Together with professor Santucci and professor Micheli, a member of the board of directors of the Association will attend the interview.
The project will be operative for twelve months.
