Lottery cash could help fight rare diseases

| Sat, 11/10/2007 - 04:16

Lottery cash could help fight rare diseasesCash from the Italian national lottery could be used to fight rare diseases, Health Minister Livia Turco said this week.

Speaking after a conference with medical experts, Turco said she would speak to the government about earmarking revenue from state betting and gaming to fund research into rare diseases.

"I will raise this idea with Economy Minister Tommaso Padoa-Schioppa and Premier Romano Prodi," she said. "Much revenue from gaming is already used in a number of government activities and it is important that we also use this money to fight rare diseases".

Turco further announced that Italy would have a national plan for fighting rare diseases within three months, along with a special information hotline and a day for raising public awareness on rare diseases.

"Rare diseases are somewhat unique, as each one has its own particularities that need to be taken into account," the minister said.

"At the same time a national plan needs to consider the local area and public healthcare. This means a number of different bodies all have to work together if any real progress is to be made".

The national plan is part of a broader project, seeking to draft guidelines that could eventually be applied across Europe.

The three-year study involves 17 states, the patient-driven European Organization for Rare Diseases (EURORDIS) and the US National Institute of Health.

The initiative will draw on national healthcare plans in the various countries involved in order to produce a series of final recommendations that will eventually be presented to the European Commission.

It will also decide on the best way to assess the effectiveness of different national activities and will publish a series of disease-specific plans and best practices.

During the conference it was also revealed that the Italian body involved in the project, the National Rare Diseases Centre at the Higher Health Institute (ISS), has been tasked with coordinating the European scheme.

"This project gives Italy a leading rule in a key sector of European Union health," commented ISS President Enrico Garaci.

So far, only France has finalized its national plan. Italy, Sweden, Denmark and the UK already have national policies in certain areas, while Bulgaria, Portugal, Romania and Luxembourg are in the process of drafting a plan.

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