Romanian Rare Cancers Association – RCArare Darkó Emese History Founded – June 2011; Member of The Romanian National Alliance for Rare Diseases; Joined the European Partnership for Action Against Cancer – ECPC (to identify and promote appropriate solutions and to share best practices on rare cancers). Aim To represent people affected by rare cancers, their families, organizations and professionals involved in the diagnosis and treatment of the rare cancers from Romania

Objectives To develop a national network formed from representatives of patient organizations, experts, community and public institutions; To organize information campaigns and counseling on rare cancers;  To raise awareness about the issues of children and adults affected by rare cancers;  To collaborate with individuals and organizations at national and international level;  To influence the administrative and economic structures in order to adopt responsible decisions for the future patients affected by rare cancers.  To simulate scientific research – to identify and implement the most effective therapies and methods of care;  To promote measures for early diagnosis trough particular methods, depending on the diseases;  To improve collaboration with specialists involved in the diagnosis and management of rare cancers;  To guide and to support new organizations and groups of patients;  To provide further education.

Activities Community Public awareness, campaigns about rare cancers On 19 of July 2011 – launch event of the RCArare in Bucharest, it was attended by professionals, patients and media (had a good coverage in the national press); We managed to print a leaflet a booklet (500 pieces of each) and to distribute at important events: 28 - 29 June, Zalau – Conference "European approach of rare diseases"; 10 -11 September, Bucharest – Romanian Agora Patients Associations manifestation (opportunity for meeting and discussion between members of patients associations across the country, the general public, representatives of organizations working in health, medical authorities and media representatives);

Activities 16 -18 September, Timisoara – "Balkan Congress of Medical Genetics"; 22 September, Zalau - "International CML Awareness Day" (awareness campaign – we distributed brochures and flyers in the oncology department, for patients and healthcare professionals; street campaign – to send a message of solidarity about the patients affected by CML, in hope of improving access to diagnosis and treatment); On 11 of September – RCArare was represented at the 17th ESGO – European Society Gynaecological Oncology Congress, in Milan, Italy (a seminar organized for groups and organizations representing patients affected by rare cancer).

Activities Groups: Information, advice for patients, parents Provide information on: rare cancers, procedures related to diagnosis and treatment of certain rare cancers, socio- medical services existing at national and international level; Oriented: specialists, existing health and social services in the community, national and international. Individual: Information and advice to individual patients or/and careers; We created a database of patients and started recording calls as required by The European Network of Rare Disease Help Lines – ENRDHLs, in November 2010, and we applied to be accepted into the network; We have recorded a number of 38 calls from patients diagnosed with (CML, Non-Hodgkin Lymphoma, Kaposi’s Angiosarcoma, Neuroblastoma).

Our activities are mainly supported by Novartis In the future we propose to do: Preparing informational materials (lunch our website, translating informational materials); Organizing meetings with specialist in order to organize the Help-line activities; Carrying out direct activities for beneficiaries (first group of patients with CML in November, counseling and guidance: social, legal and medical aspects). Our activities are mainly supported by Novartis Thank you! http://www.youtube.com/watch?v=GDPuTzBVhW0