| Lesch-Nyhan Syndrome |
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Lesch-Nyhan Syndrome is a very rare disease that has severe implications on affected people and their families life.
Lesch-Nyhan Syndrome is a very rare disease that has severe implications on affected people and their families life.
Medical care, daily management and rehabilitation need particular knowledge and strategies, otherwise patients and caregivers’ lives become really “impossible”.
Since the number of cases is limited and information is scarce, this web site, edited by families, is intended to be a means of communication that can overcome national frontiers and the barrier of the different languages, and allows for the circulation of experiences, news, instruments, meeting dates and possible therapeutical news..
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Reserved Area for the families. Please enter your username and password.
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| Initiatives |
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Federico keep going … and participate in the Tor Des Geants Endurance Trail
Federico : racing again for Lesch-Nyhan fundraising
After the 2011 great adventure during Gran Trail Valdigne 100 km trail, a full success not only as a personal sport result but especially as a fruitful fundraising (above 16.000.00 €), I decided to try again in...
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| Latest News |
[ Saturday, February 18th, 2012 ]
MEETING ON LESCH-NYAN SYNDROME IN GENOA, ITALY.
MEETING ON LESCH-NYAN SYNDROME IN GENOA, ITALY.
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... |
[ Dec. 15th 2011 ]
AGREEMENT WITH THE UNIVERSITY OF SIENA
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... |
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