On 19 th of November 2018, EFA organised a meeting with a group of patients in Brasov, Romania, willing to establish a patient organisation on respiratory diseases and allergy. This was supported by Ioana Agache, President of EAACI. The aim of the meeting was to support the creation of a platform, share experiences and build a network in order to settle a first group of people that can be committed to establish a patient association.
The meeting focused on key points to make a patient organisation successful: from general aspects like the structure of an organisation to more operative ones such as fundraising, communication and developing a workplan.
The patient group pointed out that due to a lack of interest about respiratory diseases and allergies in Romania, it is difficult to attract funding. Hence, the participants also worked on solutions to overcome this obstacle.
Invited local stakeholders shared their experiences working for or with patient organisations in Romania: the Romanian Tuberculosis Patients Association shared the challenges it faced and still faces, but most of all their success stories as patient advocates to build on.
Professor Ioana Agache, spoke about medical societies, healthcare professional communities and possibilities for collaborations with patient groups, a topic that she is very keen on. Professional journalists explained how important it is to communicate about health to the general public and the importance of patient groups in providing reliable and patient friendly information.
The group agreed to establish a patient association on asthma, allergy and COPD – FANTASTIC!. Professor Agache encouraged the group to strengthen ties with other patient groups since “request for change coming from the patient community are more impactful than coming from the medical community”. EFA is exited about these developments are available for progress support, and looks forward the day when we have Romania represented in EFA.