| 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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I’m one of the Giants!!
Dear Friends,
I did it, 141 hours and 11 minutes.
Hurrah, I’m one of the Giants!!
Finisher n° 361 of the “Tor Des Geants” out of 629 starters.
The desire not to let down my nephew... |
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| Latest News |
[ Friday 28th September 2012 ]
First data on the research we have funded
56° National Meeting of the Italian Society of Biochemistry and Molecular Biology
II Poster Session – Friday 28th September, 16:30 – 18:30
Vanna Micheli (Siena) "Preclinical testing of PNP inhibitors analogues of Immucillin-G for the therapy of Lesch-Nyhan disease: preliminary... |
[ September 2012 ]
TOR DE GEANTS LIVE!
Federico's trail live!
new link : insert 589
http://lnx.vdatrailers.it/cronometraggio_2012_tdg/
cronometraggio.php?GARA=1 |
[ October 8-9, 2012 ]
RARE DISEASE AND ORPHAN DRUG REGISTRIES International Workshop
Our association will participate in
RARE DISEASE AND ORPHAN DRUG REGISTRIES
International Workshop
October 8-9, 2012
Italian National Institute of Health – Viale Regina Elena, 299 - Rome (Italy)
http://www.epirare.eu/_meet/20121008.html
We hope that other LN associations, clinicians and... |
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