Sta da napisem,a da ne bude pateticno :( Trenutno sam u grupi za sakupljanje pomoci za decu koja boluju od Batenove bolesti,za transplantaciju srca Sladji i Marijani,za transplantaciju pluca Ireni,za transplantaciju bubrega Darji...A,koliko jos ljudi ima iste muke....To su ljudi kojima ova drzava ne priznaje bolesti,ne zeleci da pomogne,izgovara se da to nije zakonom predvidjeno.Pa,ko pise te zakone?Po logici,taj ko ih pise trebalo bi da moze i da ih popravlja,menja,poboljsava...A,sredstava ima,ako se rasporede po prioritetima,a valjda je zdrava nacija najveci prioritet.Ili gresim?...

#5: -

Žao mi je što moram da konstatujem da ovo što mi zahtevamo peticijom u Italiji Senat zahteva od Vlade, odnosno isto joj nalaže, pozivajući se na Ustavom zagarantovana ljudska prava na život i lečenje, tako da smo mi još mnogo, mnogo daleko od ostvarivanja ciljeva iz peticije, a bićemo još dalje ukoliko ne bude potpisana u većem broju...

Izvod iz italijanskog zakona "Act of Legislature of Investigation No. 1-00483", materijal dobijen ljubaznošću gđe Biljane Novaković:

Act No. 1-00483, Published October 19, 2011:

The Senate,
.....
commits the Government:
1) to take all the necessary tools to continue updating the list of rare diseases of the Ministerial Decree No 279 of 2001, including 109 diseases already identified in Appendix 7 of the Decree of President of the Council of Ministers 21 March 2008 as well as providing necessary measures in order to allow a regular update of this list, pursuant to Article 32 of the Constitution;
2) to take all necessary measures to: a) ensuring the care of patients suffering from rare diseases, in particular through access to care and assistance, material, economic and psychological, b) to establish a national Committee for rare diseases, able to monitor the phenomenology, the incidence and management of the funds; c) establish rules providing for the authorization of use to facilitate access to innovative medicines called orphans, d) promote scientific research aimed at identifying new therapies or drugs for the treatment of rare diseases.