LND Net

Lesch-Nyhan Disease support group

The network for people living with the Lesch-Nyhan Disease, their parents, teachers and anyone interested in learning more about LND.

Latest Activity

Caroline left a comment for Graziano,Janete do Carmo Soldera
"Ola Janete! Sou Caroline mãe do Gabriel (5 anos). Moramos no Rio de Janeiro. Você é parente de algum menino Lesch-Nyhan? Abraços "
Jul 23
Graziano,Janete do Carmo Soldera is now a member of LND Net
Jul 22
BURAK ERGUN posted photos
Jul 17
BURAK ERGUN left a comment for Tiffany
"Hi Tiffany, i'm Burak's cousin Dilan. You asked me about wheelchair we used to use baby carriage for twins İt was big but its not enough now we had made a special wheelchair i will aploud a photo."
Jul 17
BURAK ERGUN and ebru90 are now friends
Jul 17
Robert Hoffman is now a member of LND Net
Jun 27
sriragesh is now a member of LND Net
May 31
Hayden is now a member of LND Net
Apr 23
Lisa Gehman posted a discussion

newly diagnosed

Hello my name is Lisa and I am new to the group. My son, Ethan, has been diagnosed with LNS. For 13 years he has been misdiagnosed. He will be 15 in June. I am sure that I will have questions in the future but for now I just wanted to introduce myself to the group.
Apr 21
Lisa Gehman is now a member of LND Net
Apr 20
Claire Colmer posted a discussion

Lip guard

HiI am looking for a lip guard like the one below for a pupil who has epilepsy and bites his lips. I know its not LND but this seemed like a good place to ask for lip protectors. Any ideas?See More
Apr 16
Erny Muller is now a member of LND Net
Apr 3
Paola Mazzuchi shared a profile on Facebook
Apr 3
Paola Mazzuchi replied to Claire Colmer's discussion Kidney transplant
"Dear Claire, sorry I'm not very active in this net, because language is an obstacle...!   I In 2011 I started the association of LND Italian families and are very busy with it see…"
Apr 3
Oneater Bush is now a member of LND Net
Apr 1
Rasheedah A. Mahali and Tammy are now friends
Mar 18
 

Welcome to LND Net!

LND Net member Anne Powell has written a memoir of her experiences growing up with her brother, Bob who had Lesch-Nyhan. It is available at Amazon.com. Dr. William Nyhan wrote the Forward and portions of the book were published in the December 2013 Journal of Genetic Counseling.

Forum

newly diagnosed

Hello my name is Lisa and I am new to the group. My son, Ethan, has been diagnosed with LNS. For 13 years he has been misdiagnosed. He will be 15 in June. I am sure that I will have questions in the…Continue

Started by Lisa Gehman in Announcements Apr 21.

Lip guard

HiI am looking for a lip guard like the one below for a pupil who has epilepsy and bites his lips. I know its not LND but this seemed like a good place to ask for lip protectors. Any ideas?…Continue

Started by Claire Colmer in Announcements Apr 16.

Kidney transplant 4 Replies

Hi I am currently working with a 12 year old young man who is due to have a kidney transplant. I just wondered whether anyone has had or knows someone who has LND and has had a kidney transplant .Continue

Started by Claire Colmer in Announcements. Last reply by Paola Mazzuchi Apr 3.

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