“We are not alone. We are not different.”

A workshop for Polish patient organisations representing those affected by brain disorders took place in Warsaw on December 1st. This Training Initiatives for Neurology Advocates (TINA) event was run by EFNA with the support of NeuroPozytywni (Polish patients with neurological diseases advocacy group).

Participants represented a wide range of brain advocacy and support groups, from Alzheimer’s Disease, Parkinson’s Disease, childhood epilepsy, MS and mental health, to the rare neurological disorder AHC.

In the first session Prof. Maria Barcikowska of the Polish Brain Council provided an overview on how the brain works, and we saw a beautifully illustrated ‘brain atlas’, authored by Prof. Wiesław Nowiński.

The workshop, focusing on enriching advocacy skills for patients, also included speakers involved in the areas of policy and governance. Polish Ombudsman Mr. Adam Bodnar talked about many areas where brain health forms part of his work, including nomination of a mental health coordinator who is now part of his team. He also reiterated that we need to fight for a language that will not further stigmatize people affected by ill brain health. This is particularly true in the area of mental health, where inappropriate and stigmatizing language is still used.

Member of the European Parliament Mr. Bogdan Wenta, one of the best handball Polish players of all time, described his work in the area of promoting health, including brain health, and in promoting the involvement of people with disabilities in sport. He emphasised that patients need to know that they are not alone and they are not different.

Workshops that followed focused on three areas that have been identified by Polish patients as priorities: i) Health Technology Assessment ii) creating effective awareness campaigns and iii) building partnerships for progress.

The event was very helpful in cementing the cooperation between the different disease areas represented and resulted in a joint call reiterating the need for a Polish Brain Plan with patients’ needs at its centre.

Presentations from the day can be accessed on YouTube here.

 

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