The foundation and nature of the Association
On 5th June 1976, just as had happened or was happening in many other parts of Italy, the "Associazione per il bambino thalassemico" (Association for thalassaemic children) was also set up in Rovigo, with articles of incorporation and statute approved before a public notary.
The Rovigo association changed its name to "Associazione veneta per la lotta alla talassemia" (Veneta Association for the fight against Thalassaemia) in 1983 since by this time, thanks to new therapies, many thalassaemic children had become teenagers and young adults.
Finally, on 5th May 1996, the Association Assembly approved a new Statute and asked to join the Veneto region register of voluntary organisations. This registration took place on 5th August 1996, registration number RO0077, and was confirmed on 28th September 1999 and in July 2002.
In accordance with comma 8 of article 10 of Government Decree no. 460 dated 4th December 1997, the Association is also an ONLUS (Non profit-making organisation of social value). The Association is headed by a Board .
The Association's headquarters
The Association is involved in
- taking care of thalassaemics in health service structures;
On 5th March 1997 inParis the Association took part in the foundation of the EURODIS (European Organization for Rare Disorders) and since then has been represented on the Organization's Board (www.eurordis.org).
In December 1977 in Milan, in the Sala delle Colonne of the National Science and Technology Museum, the Rovigo Association, together with the Associations from Catania, Ferrara, Genoa, Lazio, Milan, Naples, Reggio Calabria, Rome, Taranto and Turin, formed the "Lega italiana per la lotta contro le emopatie e i tumori dell'infanzia" (The Italian League for the fight against haemopathy and tumours in children), whose activity officially closed in 1994.
Financing scientific research
Since the early Nineties, the Association has been collecting funds, with which it has financed several research projects. In particular, an agreement was signed in July 2000 with the Biotechnology Centre at FerraraUniversity to set up a "Laboratorio di ricerca sulla terapia farmacologica e farmacogenomica della talassemia" (Laboratory for the development of pharmacological and pharmacogenomic therapy of thalassaemia). The Association is currently co-owner of several patents.