Brain Awareness Week 2023

EFNA Patient Advocacy Campaign

This year we marked Brain Awareness Week by running a social media campaign to raise awareness of the access issues that affect people living with neurological conditions in Europe – be that access to timely diagnosis, treatments or care – and why action must be taken to prioritise neurology in health policies.

Here are some of our posts over that campaign. If you would like to stay connected to our neurological patient advocacy work, consider following us on our social channels:

Twitter – @EUneurology
Instagram – @euneurology
Facebook
LinkedIn

EFNA has today published a position paper on targets relating to national plans and awareness campaigns within the WHO Intersectoral Global Action Plan on #epilepsy and other neurological disorders (IGAP).

Neurological disorders are a significant public #health challenge and addressing them has become a global priority with the adoption of the IGAP in 2022. EFNA recognises the critical importance of implementing the IGAP and calls attention to two specific IGAP targets that are essential prerequisites for the successful rollout of the plan- the first relating to national plans and the second to #awareness campaigns. The position paper highlights the importance of these two targets and provides recommendations for achieving them comprehensively.

It is a fluid document, which will be updated in the coming years, as implementation of the Action Plan progresses. While IGAP priorities may differ between organisations and regions, this initial position paper is intended act as a strategic starting point for national-level #neurology #advocacy groups to gather local political and financial support.
Download the position paper here: https://www.efna.net/position-paper-igap/

‘Brain Health’ is a concept that encompasses the brain and its extensions through the spinal cord, central and peripheral nervous systems. The term can be used advantageously to prioritise and promote #neurology!

Read an article by EFNA’s Senior Advocacy Coordinator, Tadeusz Hawrot, on the subject here:

The rapidly evolving area of Brain Health

Highlighting the issues facing neurological patients in the EU:

Did you know that for almost 1/3 of people in Europe living with a neurological condition there are NO available treatment options?!

We must take action to see the necessary prioritisation of #neurology in #research.

Read the full results of our survey on “Accessing diagnosis and care pathways of people living with neurological disorders in Europe”: https://buff.ly/3fJDFYh

Over 1 in 5 people living with a neurological condition in Europe do not have access to affordable treatment options! Action is needed to ensure #AccessForAll

Read EFNA’s full survey report here: https://buff.ly/3fJDFYh

31% of respondents to an EFNA survey report a lack of efficacy with the treatment intervention given to manage their neurological condition.

Read EFNA’s full survey report here: https://buff.ly/3fJDFYh

Over 1 in 5 people living with a neurological condition in Europe do not have access to affordable treatment options! Action is needed to ensure #AccessForAll

Read EFNA’s full survey report here: https://buff.ly/3fJDFYh

Highlighting the issues facing European females dealing with neurological conditions

Only 22% of females across Europe have access to treatment interventions which are affordable and satisfactorily manage their neurological condition.

Read EFNA’s full survey report here: https://www.efna.net/survey-results-2022/

Sadly, 31% of females across Europe indicate that accessible treatment does not satisfactorily manage their neurological condition.

Read EFNA’s full survey report here: https://www.efna.net/survey-results-2022/

According to a recent EFNA survey, 25% of females across Europe indicate there are no available treatment options for their neurological condition!

https://www.efna.net/survey-results-2022/

Highlighting patient statistics regarding rare neurological issues in Europe

85% of people living with rare neurological conditions experienced symptoms prior to diagnosis but 20% of them need to visit FIVE or more clinics before obtaining a treatment plan!

98% of people living with a rare neurological condition indicate it has had a negative impact on their overall wellbeing.⠀

Prioritising actions to improve people’s #brainhealth will mean huge benefits for #mentalhealth also!⠀

At a time when everyone is feeling steep increases in the cost of living, it is worth remembering that those affected by chronic health conditions are among the worst affected. 4/5 people living with a rare neurological condition indicate it has had a negative impact on their finances.⠀

Highlighting the urgent need for Universal Health Coverage for patients with Neurological Conditions

While Universal Health Coverage is a well-recognised goal in the EU, unfortunately this basic right is not yet a reality for far too many European patients. The EU and its Member States have to urgently address increasing health inequalities, healthcare barriers and unmet needs faced by patients in Europe.⠀

Read EFNA’s statement on UHC

Universal Health Coverage (UHC) represents the essential framework for delivering neurological care. A broad public health approach, grounded in principles of UHC is needed to improve the care and quality of life of those affected. Meaningful engagement with people with lived experience is critical!⠀

Read EFNA’s statement on UHC

It is a global target of WHO’s Intersectoral Global Action on Epilepsy & other Neurological Disorders that 75% of countries should include neurological disorders in the Universal Health Coverage (UHC) package by 2031. Let’s get to work!⠀

Read EFNA’s statement on UHC