LND Famiglie Italiane ONLUS
The Association of Italian families involved
in the fight against the Lesch-Nyhan
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Lesch-Nyhan disease: new perspectives in the description and in diagnostic, therapeutic and health service approach [ 15th OCTOBER 2016 ]
Lesch-Nyhan disease: new perspectives in the description and in diagnostic, therapeutic and health service approach

The meeting will be held at the Università di Siena on october 15, 2016, jointly organised by the University and the "LND famiglie italiane" Association.
The meeting is intended to gather different expertise mainly focusing on neurological and behavioral aspects of the disease, specific tools to be used for patient quality of life (dental bit es, special wheelchairs, physiotherapy), medical aspects such as renal problems. We also hope to have some focus on research in view of specific therapies. The meeting should address medical doctors, nurses, physiotherapists (providing course credits "ECM"), care-givers, families and researchers.
We are planning to have scientific lectures followed by a meeting between clinicians and families in the afternoon.
Most Scientific Committee of the Association "LND famiglie italiane" will attend the meeting.
flyer
 
Rare disease day 2014 [ 1st March 2014 ]

Join together for Better Care

The no-profit Association “LND Italian Families” (LND Famiglie Italiane Onlus) will celebrate the Rare Disease Day in Saronno presenting the fairy tale book “Prince Michele” , a fable written by Michele, a young man affected by Lesch-Nyhan Disease (LND). The book was made possible thanks to the help of Elena, who was MICHELE’s HANDS, as she writes in the preface, but also his patient companion and listener.

Since for those who are affected by LND to “give a HAND” also means to hold your HANDS, to replace your HANDS….


Official website 

www.rarediseaseday.org/event/italy/238
 
 
International Meeting in Paris [ 15-16 June 2013 ]

On 15-16 June, French association Lesch-Nyhan Action organizes in the premises of Alliance Maladies Rares in Paris at the hospital Broussais, a meeting among doctors and families about the Lesch-Nyhan disease.
During the meeting, our Association will have a space to introduce itself. In addition there will be a meeting between delegations of other countries to develop a common European action.
It will also be an opportunity to continue the work which aims at a European Registry of the disease.
The Italian delegation includes prof.Vanna Micheli, dr. Maja di Rocco, dr. Maria Rosa Caruso, dr. Alessandra Schiaffino, Dr. Luciano Vittozzi, in addition to the president Paola Mazzuchi.

Other news in French and pictures www.lesch-nyhan-action.org/l-association/r%C3%A9union-2013
 
First data on the research we have funded [ Friday 28th September 2012 ]
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 in vitro studies"

(First data on the research we have funded with funds raised during the Great Trail Valdigne in 2011)
 
TOR DE GEANTS LIVE! [ September 2012 ]
Federico's trail live!
new link : insert 589
http://lnx.vdatrailers.it/cronometraggio_2012_tdg/
cronometraggio.php?GARA=1
 
RARE DISEASE AND ORPHAN DRUG REGISTRIES International Workshop [ October 8-9, 2012 ]
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)
www.epirare.eu/_meet/20121008.html
We hope that other LN associations, clinicians and researchers from Europe participate in the work.
our abstract
 
MEETING ON LESCH-NYAN SYNDROME IN GENOA, ITALY. [ Saturday, February 18th, 2012 ]
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 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.

 
 
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