Collaboration for the management of rare diseases - ColaboRARE

Description

The project Collaboration for the management of rare diseases – ColaboRARE submitted by the National Alliance for Rare Diseases Romania aims the improvement of the quality of life of patients with rare diseases and the intensification of the communities’ and authorities’ responsibility towards these people. Objectives: 1. Development of inter-sectorial partnerships for monitoring and reassessment of care needs and improvement of the quality of existing specialized social services 2. Strengthening internal capacity of RONARD, including its members, to promote public policy and advocacy, and monitoring their implementation The project will contribute to strengthening the internal capacity of RONARD to implement monitoring initiatives of the authorities and to formulate proposals and develop advocacy campaigns. Member organizations will be more able to engage in public policy development and decision-making. We will develop new, inter-sectorial partnerships and promote the right to health.

Summary of project results

The Romanian National Alliance for Rare Diseases has implemented the project "Collaboration for the management of rare diseases – ColaboRARE", having as main goals to improve the quality of life of patients with rare diseases and to increase community’s responsibility toward them. Rare diseases often do not have a satisfactory treatment or any treatment at all. The need for integrated care provision is crucial, in order to alleviate the impact that a rare disease has on the daily life of the patient and their family. Social and daily challenges faced by people living with a rare disease and their families prove the need for inter-sectorial cooperation and intervention. During the project, 4 inter-sectorial meetings, with a total of 162 participants, a national conference with 168 participants and evaluations of training needs for the coalition’s members have been carried out. Also, 3 training sessions on “How to communicate with journalists”, having 67 participants (members of the National Alliance for Rare Diseases organisations) , were organised. A national campaign for Rare Diseases Day 2016 was implemented; its theme referred to patients’ voice and involved various stakeholders: patients, families, volunteers, professionals, national authorities. The project, together with the awareness campaign, had a notable impact: - The Order of Ministry of Health for accreditation of Centres of Expertise for rare diseases has been published at the end of April 2016, this being the main result of the project which will generate a major impact in the coming years; - A position paper on integrated care services for patients with rare diseases was formulated; - A partnership agreement with the National Authority for People with Rare Diseases has been signed; - The online platform www.participrare.ro was created; - An online radio was established (www.radionoro.ro); - The ISO 9001/2015: certificate no. D006758 1632 01 was obtained, for the following area: Information, lobby and advocacy in the field of rare diseases; - 200 abstract volumes have been printed and distributed for the national conference; also 1000 guidelines for emergency services and 500 brochures for integrated care were disseminated. Overall, the organisational capacity has been strengthened and ANBRaRo is now more able to promote public policies for people living with rare diseases, in a sustainable way.

Summary of bilateral results