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“impossible”.
LND FAMIGLIE ITALIANE The European Federation Lesch-Nyhan Disease (LNDE), the French and Italian patient representatives groups Lesch-Nyhan Action (LNA) and LND Famiglie Italiane are happy to invite you to our: International Workshop - Lesch-Nyhan Action 2020. that will take place on May 8th and 9th 2020, in Alliance Maladies Rares premises at 96 rue Didot,75014
LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY … LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY UNRESOLVED ASPECTS V. Micheli1,2, M. Bertelli3, G. Jacomelli 1, A. Santucci, G. Bernardini1 1Dpt. Biotechnology, Chemistry and Pharmacy, University of Siena, Via A. Moro 2, 53100 Siena, Italy 2LND Famiglie Italiane ONLUS, Via Giovanetti 15-20, 16149 Genova, Italy 3MAGI non-profi t organization, Via delle Maioliche 57/D, 38068 Rovereto (TN) - Italy LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT … Alessandra Schiaffino Psychologist , Psycoterapist. ASL 3 "Genovese" Disabled- Assistance Unit Motor Education Center LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT SCHOOL. LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LND FAMIGLIE ITALIANE LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them Know more. 100 yearsof running.
LND FAMIGLIE ITALIANE Living with Lesch-Nyhan: suggestions to manage Lesch-Nyhan behaviours more effectively. Download the document. Issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità. The scientific section of the present issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità includes a paper on the Lesch-Nyhan disease. LND FAMIGLIE ITALIANE Asociaciòn del Sindrome Lesch-Nyhan Espana. (Spanish Association of Lesch-Nyhan syndrome) www.lnd.se. Lesch-Nyhan Disease Sverige - Sweden. lndnet.ning.com. Lesch AN (IM)POSSIBLE LIFE The goldfish remained on the surface of the water and heard, like in a song, a voice saying: “You are alive.You are beautiful. I love you!”. He forgot his discouragement and darted happily towards the LIVING WITH LESCH-NYHAN SUGGESTIONS TO MANAGE LESCH-NYHAN LND Famiglie Italiane Onlus Associazione di volontariato per la lotta alla Lesch-Nyhan Via Giovanetti 15-20, 16149 Genova tel. 3387953875 WWW.LND-IT.COM presidente@lnd-it.com LND FAMIGLIE ITALIANE 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”.
LND FAMIGLIE ITALIANE The European Federation Lesch-Nyhan Disease (LNDE), the French and Italian patient representatives groups Lesch-Nyhan Action (LNA) and LND Famiglie Italiane are happy to invite you to our: International Workshop - Lesch-Nyhan Action 2020. that will take place on May 8th and 9th 2020, in Alliance Maladies Rares premises at 96 rue Didot,75014
LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY … LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY UNRESOLVED ASPECTS V. Micheli1,2, M. Bertelli3, G. Jacomelli 1, A. Santucci, G. Bernardini1 1Dpt. Biotechnology, Chemistry and Pharmacy, University of Siena, Via A. Moro 2, 53100 Siena, Italy 2LND Famiglie Italiane ONLUS, Via Giovanetti 15-20, 16149 Genova, Italy 3MAGI non-profi t organization, Via delle Maioliche 57/D, 38068 Rovereto (TN) - Italy LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT … Alessandra Schiaffino Psychologist , Psycoterapist. ASL 3 "Genovese" Disabled- Assistance Unit Motor Education Center LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT SCHOOL. LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LND FAMIGLIE ITALIANE LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them Know more. 100 yearsof running.
LND FAMIGLIE ITALIANE Living with Lesch-Nyhan: suggestions to manage Lesch-Nyhan behaviours more effectively. Download the document. Issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità. The scientific section of the present issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità includes a paper on the Lesch-Nyhan disease. LND FAMIGLIE ITALIANE Asociaciòn del Sindrome Lesch-Nyhan Espana. (Spanish Association of Lesch-Nyhan syndrome) www.lnd.se. Lesch-Nyhan Disease Sverige - Sweden. lndnet.ning.com. Lesch AN (IM)POSSIBLE LIFE The goldfish remained on the surface of the water and heard, like in a song, a voice saying: “You are alive.You are beautiful. I love you!”. He forgot his discouragement and darted happily towards the LIVING WITH LESCH-NYHAN SUGGESTIONS TO MANAGE LESCH-NYHAN LND Famiglie Italiane Onlus Associazione di volontariato per la lotta alla Lesch-Nyhan Via Giovanetti 15-20, 16149 Genova tel. 3387953875 WWW.LND-IT.COM presidente@lnd-it.com LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LND FAMIGLIE ITALIANE Living with Lesch-Nyhan: suggestions to manage Lesch-Nyhan behaviours more effectively. Download the document. Issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità. The scientific section of the present issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità includes a paper on the Lesch-Nyhan disease. LND FAMIGLIE ITALIANE Scientific Committee Coordinator for international contacts Dr Jasper E. Visser, MD, PhD , Radboud University Nijmegen Medical Centre (NL) Coordinator of the Scientific Committee for Italian patients. LND FAMIGLIE ITALIANE ON THE WEB: For international information on the diagnosis it is best to refer to www.lesch-nyhan.org in which there are also news in French, Dutch,Spanish and Chinese
LND FAMIGLIE ITALIANE LND Famiglie Italiane. Voluntary Association for the fight against the Lesch-Nyhan. Entered in the National Registry of Volunteers. dec. 1150 del 21/04/2011 code SN-GE-007/2011. Via Giovanetti, 15-20 - 16149Genova (GE)
LND FAMIGLIE ITALIANE ON THE WEB: Diego, now 32 years old, was one of the main characters of Chapter 9 of "An (Im)Possible Life" the book Paola wrote in 1997. Diego's hope Angela, the mother of Diego a 17 year old young man, confirms, how the urgency of a "special" support for the families is true LND FAMIGLIE ITALIANE malattierare.marionegri.it Regione Lombardia - Centro di Coordinamento della Rete Regionale per le Malattie Rare (Region Lombardia, Italy - Coordination Centre of the Regional Network for Rare Diseases) LND FAMIGLIE ITALIANE There are several occasions where you can support the association's activities and research. Carry us around with our shirts, the message of solidarity with those who run not to leave us alone. LND FAMIGLIE ITALIANE Tor des Geants 2017, the hardest and most fascinating endurance trail running in the world, is back from 10 to 16 of September. The race is 210 miles, to be completed in 150 hours, with an altitude range of 82.000 feet, thru the highest peaks in Europe.LESCH-NYHANWEB VIEW
Lesch-Nyhan disease: on the way to an Italian register. Comitato Scientifico dell’ Associazione LND Famiglie Italiane Onlus. M. Di Rocco1,2, V. Micheli1,3, A LND FAMIGLIE ITALIANE 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”.
LND FAMIGLIE ITALIANE The European Federation Lesch-Nyhan Disease (LNDE), the French and Italian patient representatives groups Lesch-Nyhan Action (LNA) and LND Famiglie Italiane are happy to invite you to our: International Workshop - Lesch-Nyhan Action 2020. that will take place on May 8th and 9th 2020, in Alliance Maladies Rares premises at 96 rue Didot,75014
LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY … LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY UNRESOLVED ASPECTS V. Micheli1,2, M. Bertelli3, G. Jacomelli 1, A. Santucci, G. Bernardini1 1Dpt. Biotechnology, Chemistry and Pharmacy, University of Siena, Via A. Moro 2, 53100 Siena, Italy 2LND Famiglie Italiane ONLUS, Via Giovanetti 15-20, 16149 Genova, Italy 3MAGI non-profi t organization, Via delle Maioliche 57/D, 38068 Rovereto (TN) - Italy LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT … Alessandra Schiaffino Psychologist , Psycoterapist. ASL 3 "Genovese" Disabled- Assistance Unit Motor Education Center LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT SCHOOL. DESCRIPTION OF THE LESCH‐NYHAN NEUROBEHAVIORAL DISORDER He uses a wheelchair with anti-tip bar and wears gloves. He is severely dysarthric, but able to formulate complex sentences. He regularly attends middle school, LND FAMIGLIE ITALIANE LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them Know more. 100 yearsof running.
LND FAMIGLIE ITALIANE Diego, now 32 years old, was one of the main characters of Chapter 9 of "An (Im)Possible Life" the book Paola wrote in 1997. Diego's hope Angela, the mother of Diego a 17 year old young man, confirms, how the urgency of a "special" support for the families is true and AN (IM)POSSIBLE LIFE The goldfish remained on the surface of the water and heard, like in a song, a voice saying: “You are alive.You are beautiful. I love you!”. He forgot his discouragement and darted happily towards the LIVING WITH LESCH-NYHAN SUGGESTIONS TO MANAGE LESCH-NYHAN LND Famiglie Italiane Onlus Associazione di volontariato per la lotta alla Lesch-Nyhan Via Giovanetti 15-20, 16149 Genova tel. 3387953875 WWW.LND-IT.COM presidente@lnd-it.com LND FAMIGLIE ITALIANE 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”.
LND FAMIGLIE ITALIANE The European Federation Lesch-Nyhan Disease (LNDE), the French and Italian patient representatives groups Lesch-Nyhan Action (LNA) and LND Famiglie Italiane are happy to invite you to our: International Workshop - Lesch-Nyhan Action 2020. that will take place on May 8th and 9th 2020, in Alliance Maladies Rares premises at 96 rue Didot,75014
LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY … LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY UNRESOLVED ASPECTS V. Micheli1,2, M. Bertelli3, G. Jacomelli 1, A. Santucci, G. Bernardini1 1Dpt. Biotechnology, Chemistry and Pharmacy, University of Siena, Via A. Moro 2, 53100 Siena, Italy 2LND Famiglie Italiane ONLUS, Via Giovanetti 15-20, 16149 Genova, Italy 3MAGI non-profi t organization, Via delle Maioliche 57/D, 38068 Rovereto (TN) - Italy LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT … Alessandra Schiaffino Psychologist , Psycoterapist. ASL 3 "Genovese" Disabled- Assistance Unit Motor Education Center LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT SCHOOL. DESCRIPTION OF THE LESCH‐NYHAN NEUROBEHAVIORAL DISORDER He uses a wheelchair with anti-tip bar and wears gloves. He is severely dysarthric, but able to formulate complex sentences. He regularly attends middle school, LND FAMIGLIE ITALIANE LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them Know more. 100 yearsof running.
LND FAMIGLIE ITALIANE Diego, now 32 years old, was one of the main characters of Chapter 9 of "An (Im)Possible Life" the book Paola wrote in 1997. Diego's hope Angela, the mother of Diego a 17 year old young man, confirms, how the urgency of a "special" support for the families is true and AN (IM)POSSIBLE LIFE The goldfish remained on the surface of the water and heard, like in a song, a voice saying: “You are alive.You are beautiful. I love you!”. He forgot his discouragement and darted happily towards the LIVING WITH LESCH-NYHAN SUGGESTIONS TO MANAGE LESCH-NYHAN LND Famiglie Italiane Onlus Associazione di volontariato per la lotta alla Lesch-Nyhan Via Giovanetti 15-20, 16149 Genova tel. 3387953875 WWW.LND-IT.COM presidente@lnd-it.com DESCRIPTION OF THE LESCH‐NYHAN NEUROBEHAVIORAL DISORDER † Asking for/receiving help from other people. † Verbal/nonverbal reassurance: eg, smiling and caressing. † Distraction. † Irony: joking in a mild and good-natured way. LND FAMIGLIE ITALIANE Living with Lesch-Nyhan: suggestions to manage Lesch-Nyhan behaviours more effectively. Download the document. Issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità. The scientific section of the present issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità includes a paper on the Lesch-Nyhan disease. LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LND FAMIGLIE ITALIANE LND Famiglie Italiane. Voluntary Association for the fight against the Lesch-Nyhan. Entered in the National Registry of Volunteers. dec. 1150 del 21/04/2011 code SN-GE-007/2011. Via Giovanetti, 15-20 - 16149Genova (GE)
LND FAMIGLIE ITALIANE ON THE WEB: Diego, now 32 years old, was one of the main characters of Chapter 9 of "An (Im)Possible Life" the book Paola wrote in 1997. Diego's hope Angela, the mother of Diego a 17 year old young man, confirms, how the urgency of a "special" support for the families is true LND FAMIGLIE ITALIANE Diego, now 32 years old, was one of the main characters of Chapter 9 of "An (Im)Possible Life" the book Paola wrote in 1997. Diego's hope Angela, the mother of Diego a 17 year old young man, confirms, how the urgency of a "special" support for the families is true and LND FAMIGLIE ITALIANE malattierare.marionegri.it Regione Lombardia - Centro di Coordinamento della Rete Regionale per le Malattie Rare (Region Lombardia, Italy - Coordination Centre of the Regional Network for Rare Diseases) LND FAMIGLIE ITALIANE The research of the association on LNB: work in progress! First draft presented to the S.I.O.H.'s Me LND FAMIGLIE ITALIANE Tor des Geants 2017, the hardest and most fascinating endurance trail running in the world, is back from 10 to 16 of September. The race is 210 miles, to be completed in 150 hours, with an altitude range of 82.000 feet, thru the highest peaks in Europe.LESCH-NYHAN
Lesch-Nyhan
LND FAMIGLIE ITALIANE 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”.
LND FAMIGLIE ITALIANE The European Federation Lesch-Nyhan Disease (LNDE), the French and Italian patient representatives groups Lesch-Nyhan Action (LNA) and LND Famiglie Italiane are happy to invite you to our: International Workshop - Lesch-Nyhan Action 2020. that will take place on May 8th and 9th 2020, in Alliance Maladies Rares premises at 96 rue Didot,75014
LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY … LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY UNRESOLVED ASPECTS V. Micheli1,2, M. Bertelli3, G. Jacomelli 1, A. Santucci, G. Bernardini1 1Dpt. Biotechnology, Chemistry and Pharmacy, University of Siena, Via A. Moro 2, 53100 Siena, Italy 2LND Famiglie Italiane ONLUS, Via Giovanetti 15-20, 16149 Genova, Italy 3MAGI non-profi t organization, Via delle Maioliche 57/D, 38068 Rovereto (TN) - Italy LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT … Alessandra Schiaffino Psychologist , Psycoterapist. ASL 3 "Genovese" Disabled- Assistance Unit Motor Education Center LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT SCHOOL. DESCRIPTION OF THE LESCH‐NYHAN NEUROBEHAVIORAL DISORDER He uses a wheelchair with anti-tip bar and wears gloves. He is severely dysarthric, but able to formulate complex sentences. He regularly attends middle school, LND FAMIGLIE ITALIANE LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them Know more. 100 yearsof running.
LND FAMIGLIE ITALIANE LND Famiglie Italiane. Voluntary Association for the fight against the Lesch-Nyhan. Entered in the National Registry of Volunteers. dec. 1150 del 21/04/2011 code SN-GE-007/2011. Via Giovanetti, 15-20 - 16149Genova (GE)
AN (IM)POSSIBLE LIFE The goldfish remained on the surface of the water and heard, like in a song, a voice saying: “You are alive.You are beautiful. I love you!”. He forgot his discouragement and darted happily towards the LIVING WITH LESCH-NYHAN SUGGESTIONS TO MANAGE LESCH-NYHAN LND Famiglie Italiane Onlus Associazione di volontariato per la lotta alla Lesch-Nyhan Via Giovanetti 15-20, 16149 Genova tel. 3387953875 WWW.LND-IT.COM presidente@lnd-it.com LND FAMIGLIE ITALIANE 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”.
LND FAMIGLIE ITALIANE The European Federation Lesch-Nyhan Disease (LNDE), the French and Italian patient representatives groups Lesch-Nyhan Action (LNA) and LND Famiglie Italiane are happy to invite you to our: International Workshop - Lesch-Nyhan Action 2020. that will take place on May 8th and 9th 2020, in Alliance Maladies Rares premises at 96 rue Didot,75014
LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY … LESCH-NYHAN DISEASE: A RARE DISORDER WITH MANY UNRESOLVED ASPECTS V. Micheli1,2, M. Bertelli3, G. Jacomelli 1, A. Santucci, G. Bernardini1 1Dpt. Biotechnology, Chemistry and Pharmacy, University of Siena, Via A. Moro 2, 53100 Siena, Italy 2LND Famiglie Italiane ONLUS, Via Giovanetti 15-20, 16149 Genova, Italy 3MAGI non-profi t organization, Via delle Maioliche 57/D, 38068 Rovereto (TN) - Italy LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT … Alessandra Schiaffino Psychologist , Psycoterapist. ASL 3 "Genovese" Disabled- Assistance Unit Motor Education Center LIFE EXPERIENCES: A BOY WITH LESCH-NYHAN SYNDROME AT SCHOOL. DESCRIPTION OF THE LESCH‐NYHAN NEUROBEHAVIORAL DISORDER He uses a wheelchair with anti-tip bar and wears gloves. He is severely dysarthric, but able to formulate complex sentences. He regularly attends middle school, LND FAMIGLIE ITALIANE LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them Know more. 100 yearsof running.
LND FAMIGLIE ITALIANE LND Famiglie Italiane. Voluntary Association for the fight against the Lesch-Nyhan. Entered in the National Registry of Volunteers. dec. 1150 del 21/04/2011 code SN-GE-007/2011. Via Giovanetti, 15-20 - 16149Genova (GE)
AN (IM)POSSIBLE LIFE The goldfish remained on the surface of the water and heard, like in a song, a voice saying: “You are alive.You are beautiful. I love you!”. He forgot his discouragement and darted happily towards the LIVING WITH LESCH-NYHAN SUGGESTIONS TO MANAGE LESCH-NYHAN LND Famiglie Italiane Onlus Associazione di volontariato per la lotta alla Lesch-Nyhan Via Giovanetti 15-20, 16149 Genova tel. 3387953875 WWW.LND-IT.COM presidente@lnd-it.com LND FAMIGLIE ITALIANE LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them Know more. 100 yearsof running.
LND FAMIGLIE ITALIANE Living with Lesch-Nyhan: suggestions to manage Lesch-Nyhan behaviours more effectively. Download the document. Issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità. The scientific section of the present issue of the Supplement of Notiziario dell’Istituto Superiore di Sanità includes a paper on the Lesch-Nyhan disease. LND FAMIGLIE ITALIANE LND Famiglie Italiane The Association of Italian families involved in the fight against the Lesch-Nyhan LND FAMIGLIE ITALIANE ON THE WEB: For international information on the diagnosis it is best to refer to www.lesch-nyhan.org in which there are also news in French, Dutch,Spanish and Chinese
LND FAMIGLIE ITALIANE Asociaciòn del Sindrome Lesch-Nyhan Espana. (Spanish Association of Lesch-Nyhan syndrome) www.lnd.se. Lesch-Nyhan Disease Sverige - Sweden. lndnet.ning.com. LeschMERCHANDISING
There are several occasions where you can support the association's activities and research. Carry us around with our shirts, the message of solidarity with those who run not to leave us alone. LND FAMIGLIE ITALIANE ON THE WEB: Diego, now 32 years old, was one of the main characters of Chapter 9 of "An (Im)Possible Life" the book Paola wrote in 1997. Diego's hope Angela, the mother of Diego a 17 year old young man, confirms, how the urgency of a "special" support for the families is true LND FAMIGLIE ITALIANE Diego, now 32 years old, was one of the main characters of Chapter 9 of "An (Im)Possible Life" the book Paola wrote in 1997. Diego's hope Angela, the mother of Diego a 17 year old young man, confirms, how the urgency of a "special" support for the families is true and FRIDAY AUGUST THE 30TH Federico Mazzuchi Ultra Trail Du Mont Blanc 2013 6 September 2013 Page 1 Friday August the 30th: 4:30 pm.I have never celebrated my birthdayin such a way.
LESCH-NYHAN
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Lesch-Nyhan Syndrome 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..Read more
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100 years of running Tor des Geants 2017 , the hardest and most fascinating endurance trail running in the world, is back from 10 to 16 of September. The race is 210 miles, to be completed in 150 hours, with an altitude range of 82.000 feet,... The Western States 100-mile Endurance Trail On June 25th Federico brought along the LND emblem in USA at the Squaw Valley start of one of the most fascinating and important trail in the world: the Western States 100-mile Endurance Trail. Federico not drawn for a bib, supported, as a crew member, one... The research of the association on LNB: work in progress! First draft presented to the S.I.O.H.'s Me LIVING WITH LESCH-NYHAN: SUGGESTIONS TO MANAGE LESCH-NYHAN BEHAVIOURS MORE EFFECTIVELY. 1. Be aware that LN people do not want to cause damage to themselves, to property or to others Examples: - As soon as they meet, D. spits on the other person who... Go to the initiativesLatest News
Lesch-Nyhan disease: new perspectives in the description and in diagnostic, therapeutic and health service approach 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... Rare disease day 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 byLesch-Nyhan...
International Meeting in Paris 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...Go to the news
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