Your upperplace for Free

Approximately four million people in the EU suffer from rare cancers, with 186 suffering from forms

.

Approximately four million people in the EU are affected by rare cancers, diseases that have 186 forms, which represent about 22 percent of all cases of oncological diseases, rare cancers inform the Romanian Association.

"About four million people in the EU are affected by rare cancers. There are about 186 rare cancers. Rare cancers is about 22 percent of all cases of cancer. All cancers in children are considered rare cancers, and annual are diagnosed in the EU 27 new cases of rare cancers. In Romania, according to the latest statistics of the Ministry of Health in 2005 there were 354,572 cancer patients, children and adults in the county medical records, "he said Tuesday, the Romanian Association of rare cancers.

Rare cancers are included in the category of rare diseases, which are defined in the EU as diseases with a prevalence of less than five cases per 10,000 people. Thus, patients with rare cancers face special problems, for late or incorrect diagnosis, difficulty in finding clinical expertise, difficult access to appropriate treatment, difficulty in conducting clinical trials due to small number of patients, possible lack of interest the development of new therapies, high degree of uncertainty in clinical decision-making and lack of available records and tissue banks.

"Given these challenges, we intend to bring together patients affected by rare cancers in the Romanian Association of rare cancers. I call this way all those interested to call the Help Line 080 080 1111 to join the association and get help "said Dorica Dan, president of the association.

This showed that the association aims at taking into account the objectives of equity, social justice and the interests of patients when setting public health priorities.

"We recognize the economic problems associated with providing medical assistance, but pointed out that geographical boundaries and other barriers should not impede patient access to the best standards of care. Health is a fundamental human right, whether his illness is common or rare. We support the creation and further development of networks of databases of clinical records of rare cancers that would improve the collection, provision and comparison of data on these conditions. We call for a structured collaboration between specialists in rare cancers, by creation of networks of reference will set a high standard care for patients with rare cancers. networks must not only develop in the EU Member States, but throughout Europe, "said Dan Dorica.

According to its aim to create a National Committee of initiatives in Rare cancers, consisting of representatives of the Ministry of Health, the National Health patient representatives, representatives of professional associations and industry to meaningful and transparent dialogue.

We must ensure that effective new therapies for rare cases of cancer are available to patients in a timely manner, with full refund. Procedures for assessing cost-effectiveness for therapies must be transparent and take effect within a reasonable time. These models should include cost-effectiveness, social costs and benefits of effective treatment. However, the association will start forming groups of patients Reference Center for Rare Diseases Pilot - mud, training, counseling, social and support groups.