Rare does not mean alone
A solidarity network of families, professionals and volunteers to support the patients of lesch-Nyhan
LND Famiglie Italiane is the association of Italian families involved in the fight against Lesch-Nyhan syndrome. A strong and inclusive community that offers support, discussion and information to families who face all the difficulties of a rare and little known disease every day.
What
do we do
Information and support for families
The Association provides support and useful information to families hosting children, teenagers or adults with Lesch-Nyhan disease in order to facilitate a complicated daily life and a health process that is often frustrating because it is out of the normal care “packages” and “pathways” “Provided for disabled people with more common pathologies.
Support for scientific research
The Association supports scientific research dedicated to the study of Lesch-Nyhan syndrome by stimulating and evaluating specific projects on the nature of the causes of the disease and related treatments.
Awareness events
The organized events are experienced as moments of conviviality during which other associations can be met and children and families can interact with each other. The association also promotes the integration of NLD patients with a commitment to raise awareness and collaborate with public and private bodies and structures dedicated to health and social care.
Don't hesitate
to ask us for help
Have you just received a diagnosis or are you confronting patients with Lesch-Nyhan syndrome and want to obtain information and support for a more informed and organized approach to the disease?
The association offers free support to the families of children and young people who have received the diagnosis of Lesch-Nyhan syndrome to offer them help and information for the management of the disease so that the sick and their families can lead a better daily life and not they feel confined to the isolation that creates a rare and little known pathology.
The association is also aimed at all people, medical staff, institutions and volunteers who wish to join our network of solidarity in support of Lesch-Nyhan syndrome patients and their families.
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Sostieni l’attività dell’associazione e la ricerca scegliendo di fare un regalo originale e solidale
Support LND with a donation
Your financial contribution is essential to help us support scientific research and to organize awareness raising and promotion events for the visibility of the issues.
Le ultime news
Due giorni per capire meglio la Lesch-Nyhan
Grazie anche al sostegno concreto e sostanzioso della Fondazione Fratini di Firenze la nostra associazione …
Michele, intervistato sul SECOLOXIX di Genova 16/01/2023, parla della LND
Articolo di ANNALISA RIMASSA Genova – Soprattutto, vincendo la gabbia creata dalla malattia, è con …
Contact us for
information
Our association is open to anyone who wishes to have information and support regarding Lesch-Nyhan syndrome.