International Day of Rare Diseases – „Rare, but Solidar” – Bucharest, February 16-17, 2012

Day I- Thursday, 16.02.2012

61 persons have participated to the event, representing patients, specialists, authorities, industry, media. After the welcoming speech from RoNARD’s side, it has been presented the campaign organized on the Day of Rare Diseases at international and national level, the communication theme of the campaign (Solidarity) and the decision that in Romania to be highlighted the solidarity between the rare diseases and rare cancers. Mrs. Dr. Ruxandra Drăghia-Akli, director of the Health Directorate of DG Research & Innovation from the European Commission was introduced as being the person patronizing the campaign in Romania. Two spots have been presented, one realized by EURORDIS for Rare Disease Day 2012, and the other one called „Adriana exists!”, awareness spot about rare cancers. Mrs. Prof. Dr. Maria Puiu talked about the approach of the rare diseases in the network, in multi-disciplines centres, having in this way a better possibility for diagnose and treatment for the patients. The same theme was reached also the second day, during the Round table on the theme of the expertise centres.

Mrs Dr. Ruxandra Draghia-Akli couldn’t reach the meeting due to the bad weather, but she made her presentation by phone. Her suggestions about the approach of the rare diseases were:

• Improvement of the coordination and of the research financing synergies

• Increase of the research volume

• Better connection/cooperation between the rare diseases researchers

• Acceleration of the research results translation into clinical applications – diagnosis methods, therapies and remedies

She mentioned the importance of the Romanian researchers participation in European research projects and she presented the statistical data about the participation of Romania at the Frame Program 7 – Health Theme of the European Commission. She insisted on the importance of the participation of Romania at the International Consortium of the Rare Diseases Research – IRDiRC.

She also underlined the fact that in Romania very few researching sectors do have a sectorial research plan, and due to its lack it is more difficult to obtain structural funds. The discusssions ended with the message about the importance of the efficient cooperation and communication between all actors involved in the rare diseases domain.

Day 2 – Friday, 17.02.2012.

Round Table : Expertise Centres and the European strategy concerning the rare diseases

After presenting the campaign spots, Mrs. Ruxandra Draghia-Akli was connected again by telephone for her presentation Rare Diseases in the European Programs, on which she detailed:

• The European context of the research in the rare diseases domain

• European Commission’s frame program for research and innovation Horizon 2020

• The operation of the International Consortium of the Rare Diseases Research – IRDiRC

During the conclusions, Mrs. Dr. Ruxandra Draghia-Akli gets back with the importance of elaborating a research plan in the health area, so that afterwards the Ministry of Health to intercede the Ministry of Finances, so that among the priority domains financed through the Structural Funds to be introduced this domanin, too.

From the Ministry of Health attented the meeting, the state secretary Mr. Dr. Vasile Cepoi but also three directors from the Ministry: Dr. Mihaela Bardoș, Dr. Amalia Fechete and Dr. Călin Alexandru. They have proposed a meeting at the Ministry of Health, Wednesday 22-nd of February, a very operative group, which to initiate and to discuss the most efficient way of cooperation.

Dorica Dan, RPWA President