The Health Ministry envisages increasing the number of reference centers for the treatment of rare diseases, minister in charge Sorina Pintea told a press conference on Thursday.
“This is one of our major preoccupations. I wanted to send a signal because I believe it is important that we, as a ministry, show great openness to working together with patient associations and NGOs. We have already taken the first step. The first advisor I appointed to my office is tasked with handling the relation with patient associations and NGOs. I can tell you that even before I took over, the Health Ministry had already moved in this direction. A number of 13 new molecules have been introduced last year, we have 12 rare disease centers of reference and the ministry intends to increase their number. (…) My presence here shows that this is highly important to us, to me as a person and to us as a ministry,” the Health official said at the launch of the campaign on the World Rare Disease Day.
President of the National Alliance for Rare Diseases Dorica Dan too mentioned the establishment of the 12 dedicated centres, but pointed out that Romania has neither a national directory of rare diseases, nor relevant clinical guides.
“It wasn’t an easy task to persuade authorities to make rare diseases a public health priority. Much has been done in this area of rare diseases as a result of work in unity and of cooperation between patient organizations and experts who support us. Nationwide, there are 12 certified centers of expertise. Some of these are part of European reference networks. All centers of expertise are extremely important and there are still applications to have other centers of expertise certified. We hope this process will continue because there will be a new wave of enrollment of European expertise centers. It is very important that they are certified in good time or receive letters of support. There are still shortcomings, we still don’t have a national directory of rare diseases. This is a big issue for us. Clinical guides are also missing,” Dorica Dan said.
According to her, over 95 percent of rare diseases have no treatment anywhere in the world.
The National Alliance for Rare Diseases in partnership with the European Organization for Rare Diseases are organizing again this year the Campaign on Rare Disease Day running throughout this February. More than 30,000,000 EU citizens – representing 8 percent of the population – are affected by rare diseases. The goals of the campaign are to raise awareness among decision-makers and the general public about rare diseases and their impact on the patients’ lives.