Romania: Asociația Română de Cancere Rare

Member’s description

The Romanian Rare Cancers Association (ARCrare) was established in June 2011 in order to represent people affected by rare cancers, their families, organizations and professionals involved in the diagnosis and treatment of the rare cancers in Romania. They organize dedicated workshops and conferences throughout the year and have separate workshops just for CML patients (including a caravan in different regions in cooperation with other organizations). Through these workshops, they offer advice on how to manage CML and the challenges they face. Psychosocial counseling, legal and medical advice. A telephone helpline for their CML patients.

They have also arranged dedicated sessions on CML within the program of the following events organized by them;

• Rare Diseases School for Journalists (including last year)
• Europlan Conferences
• Rare Diseases Day Conferences.

Because of their lobbying, ARCrare has succeeded to have no patients on the waiting list for treatment since 2014. They currently have on their positive list access to Imatinib, Dasatinib, and Nilotinib.

ARCrare has participated every year in the World CML Day since 2011 with different types of events and topics each year to commemorate World CML Day.

Vision: A world where people affected by rare cancers have equal access to information, early diagnosis and appropriate treatment and are integrated into the community.

Mission: Improving the quality of life of people affected by rare cancers by facilitating access to appropriate social and medical services and education.

Key programs :

• Advocacy to integrate the needs of rare cancers into the National Plan for Cancer.
• Improve the access to treatments
• Care coordination to services and experts.

Organizational objectives and key programs

• To improve access to specific information to the persons affected by rare cancers as well as to the citizens at large;
• To improve the quality of life of persons affected by rare cancers through solidarity and support;
• To consolidate ARCrare as an efficient, representative, and inclusive platform of rare cancer patients;
• To ensure the integration of the perspectives and needs of rare cancer patients in public policies that have an impact on them.
• To develop a national network formed by 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 the national and international level
• To influence the administrative and economic structures in order to adopt responsible decisions for future patients affected by rare cancers
• To promote measures for early diagnosis through particular methods, depending on the diseases
• To improve collaboration with specialists involved in the diagnosis and management of rare cancers