Some Recommendations to address The Burden of stroke in Europe- Oruen- the CNS Journal

Some Recommendations to address The Burden of stroke in Europe- Oruen- the CNS Journal

Article by Jon Barrick, SAFE President

Published in Oruen – The CNS Journal – Volume 3 Issue 1 – July 2017


Oruen – The CNS Journal – Volume 3 Issue 1 – July 2017

“Time is brain” is a concept that perfectly encapsulates the need for swift action when stroke strikes. The sooner stroke symptoms are realised, the sooner the person gets the care they need, the greater the chances for survival and life with fewer disabilities.

What happens in Europe is that a person who has a stroke for example in Catalonia, Spain, and a person who has a stroke in Bulgaria will not receive the same care, which influences their chances of survival.

Stroke Alliance for Europe (SAFE) is a non-profit-making organisation that is a coalition currently of 30 Stroke Support Organisations from across Europe. These Stroke Support Organisations (SSO’s) mutual goal is to drive stroke prevention and care up the European and national political agendas, preventing stroke through education, and supporting stroke care and patient centered research. SAFE aims to raise awareness of the major impact stroke has on individuals, and on the health and economy of Europe.

The Burden of Stroke in Europe Report, commissioned by SAFE, conducted by King’s College in London and published in May 2017, has projected that between 2015 and 2035, overall there will be a 34% increase in the total number of stroke events in the EU (from 613,148 in 2015 to 819,771 in 2035). This means that stroke prevention should be a high priority for governments and health care systems. The research findings indicate that stroke is widely undertreated, with the risk factors not being controlled and treated the way they should be.

The Report painted a gloomy picture of the present situation when it comes to stroke and how much we know about the quality and extent of stroke care, which was variable across countries, but also indicated that public awareness campaigns were not regularly occurring. In many European countries people, in general, do not know what causes stroke and how to prevent it. For most of them, stroke is still an act of God, for which mistakenly they believe there is no treatment. Risk factors such as High Blood pressure and high cholesterol, Atrial Fibrillation, diet and lack of exercise can all be combatted.

When it comes to the acute phase, we know that stroke units save lives and improve outcomes, but we don’t have a Europe-wide applied pursuit of the essential elements of stroke unit care. Despite over thirty years of evidence showing the difference stroke units make and despite their inclusion in European and national guidelines, it is estimated that only about 30% of stroke patients receive stroke unit care across Europe. This figure masks startling inequalities between countries, and in particular the East-West divide in stroke unit provision.

Please read the full article here.

Some Recommendations to address The Burden of stroke in Europe- Oruen- the CNS Journal

People Around the World to get Together Under The Umbrella in support of Brain Disorder Awareness this July


Saturday, July 22nd is World Brain Day. Organisers of the Together Under the Umbrella campaign are inviting the public to share a picture of themselves on the day, using the hashtag #UnderTheUmbrella, to help raise awareness of brain disorders.

Last year’s World Brain Day saw hundreds of pictures shared around the world – selfies, groups of family and friends, medical professionals and patient groups, all stood under umbrellas in support of brain disorder awareness. A wide variety of disease areas were highlighted in these messages including MS, Parkinsons, headache, mental health, chronic pain, ME and rare diseases.

The campaign is an initiative of the European Federation of Neurological Associations (EFNA), who bring together European umbrella organisations of neurological patient advocacy groups.

The umbrella is used as a symbol of unity by the campaign – bringing the many neurological conditions together. To find out more about the campaign visit and follow @UnderUmbrellaEU on social media.

We’re #UnderTheUmbrella for #WorldBrainDay! Join us to raise
#BrainDisorder & #[InsertYourDiseaseArea] awareness

About Together Under the Umbrella

Developed in line with a strategy to advocate for support of patient-led campaigns to educate, eradicate stigma and raise awareness of neurological and chronic pain disorders, Together Under the Umbrella aims:

• To raise awareness of the prevalence of neurological disorders
• To educate society on the range of disorders which are ‘neurological’
• To ‘brand the brain’ by grouping these disorders under a common symbol to create a unified and identifiable
• To provide a platform for European and national patient neurology groups to promote and profile their work
in the areas of advocacy, communications and fundraising using the hashtag #UnderTheUmbrella
About Neurological Disorders
• Each year, approximately 1 in 3 Europeans are affected by a brain disorder and 1 in 5 by chronic pain.
• This includes 153 million people suffering migraine or other disabling headaches, 200 million musculoskeletal
disorders, 100 million people experiencing chronic pain, 8 million living with stroke, 6 million with dementia
and 4 million with traumatic brain injury.
• The World Health Organisation estimates that brain disorders cause one-third of the burden of all diseases.
• €295 billion a year is spent on healthcare for neurological and brain disorders, making them ‘the number one
economic challenge for European health care, now and in the future’.

About the European Federation of Neurological Associations (EFNA):

The European Federation of Neurological Associations (EFNA) brings together European umbrella organisations of neurological patient advocacy groups, to work with other associations in the field of neurology, including the European Academy of Neurology (EAN), in what has been termed a ‘Partnership for Progress’.

EFNA’s aims are:
• To improve the quality of life of people with neurological disorders, their families and carers
• To promote rapid and accurate diagnosis, appropriate treatment, rehabilitation and care for people with
neurological illnesses
• To promote better access to information which is accurate and easy to understand
• To promote public awareness and understanding of neurological conditions
• To eliminate prejudice and stigma associated with neurological disorders
• To increase priority given to neurology by policy and decision makers and by health care providers.

EFNA currently has a membership of 18 associations, based in countries Europe-wide.

Some Recommendations to address The Burden of stroke in Europe- Oruen- the CNS Journal

SAFE gathered 29 SSOs for this year’s Regional Conferences in Lisbon, Riga and Berlin

During the period between 31st May and 5th July 2017, SAFE organised three Regional Conferences. These conferences were held in Lisbon, Riga and Berlin, having representatives from 5 country clusters, with 29 stroke support organisations from 26 European countries.

All three conferences were fully supported by SAFE’s long-term industry partner, pharmaceutical company Boehringer Ingelheim.

SAFE Regional Conference

SAFE Regional Conference, Berlin, Germany


PRECIOUS trial is now coming up to speed

PRECIOUS trial is now coming up to speed

After having taken many regulatory hurdles, the trial PRECIOUS is now coming up to speed!

PRECIOUS has full approval in Estonia, Germany, Hungary, Italy, Norway, the Netherlands, and the UK. Poland and Greece are almost there! A total number of 16 sites across Europe have been initiated and we expect this number to increase to 80 by the end of this year. (more…)

The mere presence of your smartphone reduces brain power, study shows

The mere presence of your smartphone reduces brain power, study shows

Your cognitive capacity is significantly reduced when your smartphone is within reach — even if it’s off. That’s the takeaway finding from a new study from the McCombs School of Business at The University of Texas at Austin.

McCombs Assistant Professor Adrian Ward and co-authors conducted experiments with nearly 800 smartphone users in an attempt to measure, for the first time, how well people can complete tasks when they have their smartphones nearby even when they’re not using them. (more…)