The second Romanian national Training Initiatives for Neurology Advocates (TINA) workshop was held last month, to coincide with World Brain Day (July 22nd). The event, held in Bucharest, was organised by the Association of Patients with Neurodegenerative Disorders (APAN Romania) in association with EFNA.
The workshop, entitled “Science, Communication and Social Affairs“, focused on understanding how various neurological diseases affect the brain and current developments in research. Participants learned to what extent these conditions are disabling and took part in an informative and open discussion on the rights of people with disabilities and what we can be applied in Romania. The session on story telling showed them new ways on communicating more effectively within the current health system, how to convey the message with more power and how to better engage stakeholders to support their cause. One of the outcomes of these trainings was also to find new opportunities to collaborate between neurological patients’ associations in Romania.
World Brain Day also marked one year since the foundation of APAN. It has been a year of achievements that has seen educational activities and informative materials for patients (young national conference with multiple sclerosis, HTA workshop, online course For neurological nurses), improved quality of life for patients (MS Kids Retreat programs – for children with multiple sclerosis, MS Navigator and MS Walk), with numerous population awareness campaigns on various neurological conditions (10,000 single-diagnosis dreams The dreams do not stop there!), Affiliation to European organizations, etc.
“APAN Romania wants to become the main voice of people with neurodegenerative diseases in Romania and to ensure that patients have a strong voice in setting their own goals and priorities,” said Dragoş Popescu, President of APAN Romania.
There were a total number of 45 participants at the workshop. All major neurological associations in Romania were present at the meeting, media (TV, radio and print), as well as some pharmaceutical representatives.
Participants included: Andreea Antonovici, Public Affairs European Platform for Multiple Sclerosis and Vice-President of APAN Romania, Dr. Laura Dumitrescu, Neurologist Neurology Department, Colentina Clinical Hospital, Prof. Dr. Bogdan O. Popescu, Chief Clinical Neurology Colentina Hospital, President of the Romanian Society of Neurology, Cristian Lupşa, Editor, DoR Magazine, Andreia Moraru, President Dizabnet, Federation of Service Providers for Disabled Persons, and Dr. George Paun, representative of the National Authority for Persons with Disabilities.
Feedback for the TINA workshop was very positive and participants reinforced their desire to continue these events as they contribute to a stronger, more empowered patient community in Romania.