Message from the SAFE President

Message from the SAFE President

Dear Friends,

We are in very difficult times. We have never seen a pandemic like this affecting our everyday lives. I hope you and your loved ones are safe and well. We want to let you know that SAFE is here for you and continuing to work despite all the problems around.

While COVID 19 is at the forefront of our thinking, stroke still exists. We know that many of you will be at the front line of services and will be seeing the impact of COVID on individuals who have suffered from stroke. We want to hear from you, we want to know what is happening to stroke survivors in your country, we want to know what is happening to your stroke support organisations and we want to know your ideas as to how we can help.

In addition to finding out how COVID 19 is affecting you and your country, SAFE has adapted its work for 2020. Unfortunately, we have not been able to meet with our members through our usual regional meetings, but we have managed to been up, virtually, June and we will again in November. We have delayed the launch of our economic burden of stroke report until November year. The SAFE General Assembly will be held in November this year and we will do this virtually as we are not able to gather you together for a face to face meeting. I am also excited to let you know that that our first European life after stroke forum is going virtual! The date of 12 March 2021 remains the same and we will share more information with you over the coming months. We will fund one representative from your SSO, and one therapist or nurse from your country.  The conference will also be open generally to delegates interested in improving life after stroke services. More information, please click here.

What is happening in the world is a lot for everyone to take in just now, and everyone is having to rapidly adapt their lives on a daily basis. I would like to thank all of you for all the exceptional work you are doing. Please continue to keep well and be safe, do what you can to ensure the survival and sustainability of your stroke support organisation, and we hope to hear from you soon.

With best wishes,

Jon Barrick

On behalf of the Board of SAFE

SAVE THE DATE – European Life After Stroke Forum, 19 November 2020, Barcelona, Spain

SAVE THE DATE – European Life After Stroke Forum, 19 November 2020, Barcelona, Spain

Life after stroke is a key priority within SAFE’s strategy. It is our pleasure to share with you the date of the first European Life After Stroke Forum – the 19 November 2020 in Barcelona, Spain.

This first European Life After Stroke Forum is driven by the need to implement the Stroke Action Plan for Europe and to create a network of stakeholders involved in professionally researching, advocating and providing evidence for improved life after stroke care.


We hope we could get you to support the European Life After Stroke Forum by sharing this information with people you know.

When? 19 November 2020

Where? Hotel Catalonia Barcelona Plaza, Barcelona, Spain

Who can attend?  Organisations and individuals who operate in the life after stroke area and are research, policy, advocacy or support oriented.

How to register? The registration link will be available soon. Stay tuned!

Please put this date in your calendar and stay tuned for more information that will follow.

We hope to welcome you to Barcelona,

SAFE team

SAFE Annual Report 2019

SAFE Annual Report 2019

You can access and download the SAFE Annual Report by clicking on this button below

SAFE Annual Report 2019

In addition, please see below the message of the President of SAFE, Jon Barrick:

This has been a busy and exciting year for our organisation, especially in terms of advocating on pan-European level. We have continued work around the Stroke Action Plan for Europe, forming an implementation committee with the European Stroke Organisation. We held a seminal event at the EU Parliament raising the profile of stroke more than ever before, engaging with the Deputy Director General of the EU’s DG Sante and the EU Committee of the Regions. Through our funding of Oxford University’s project on the economic impact of stroke, we have produced up to date and compelling evidence about the cost of stroke in Europe. With all this accomplished, we continue to press ahead, as we have now completed the third and final year of the research which will provide us with vital European and country specific data on the future economic impact of stroke and power of interventions. The Economic Impact of Stroke in Europe report will be launched in full at the Joint World Stroke Organisation/European Stroke Organisation conference in Vienna in May 2020.

We have continued with the Angels project to produce vital information booklets on stroke to distribute to patients and families while in hospital. We have provided this information in 15 different languages to ensure that more people across Europe can use our materials to improve the lives of stroke survivors.

We continue our educational work with those who wish to understand stroke support organisations and become advocates for better care through our online teaching and learning tool SSOFT, and our regional and working conferences. A particular highlight for me in 2019 was the concrete evidence of the value of our partnership orientation, our Industry partners have been very supportive again, our outreach to ESO has been reciprocated, and we continue to see the number of SSO’s grow, and then become members of SAFE. Yet again we go into a new year with record membership which bodes well for the future.

As SAFE goes from strength to strength in activities to reduce the number and effects of strokes, the Board must also ensure the long-term sustainability of SAFE. The Board has achieved much of its work through dedicated voluntary time but has recognised that this needs to be added to by full
time paid staff. The Board agreed that SAFE required more permanent leadership to drive forward and to achieve our goals. I am delighted to let you know that we recruited our first Director General this year and I know you will all join me in welcoming Arlene Wilkie into the SAFE family.

In 2019, we have been able to deliver many significant achievements because of our close working community. I would like to thank those that have worked with and for SAFE this year, and to the members and sponsors who have supported us practically and financially. This next year is my last as President and I am looking forward to ensuring we have a solid 2020 of achievement to strengthen the long-term sustainability of all stroke support organisations in Europe.

Jon Barrick
SAFE President

SAFE’s new Director General commenced in post on the 12th August 2019

SAFE’s new Director General commenced in post on the 12th August 2019

SAFE is very pleased to announce the new Director General, Arlene Wilkie, commenced in post on the 12th August, leading and overseeing the delivery of all SAFE activity and projects, working with our existing experienced team of Jelena Misita, Communications Manager, Gary Randall, SAFE European Research Officer, Lucinda Shaw, Partnerships Manager and Sandra Jackson, Secretariat.

Arlene Wilkie, SAFE Director General

Arlene Wilkie, the new Director General, comes with a wealth of experience and expertise, derived from a variety of organisations and roles over the last twenty years in the healthcare sector, primarily in patient focused organisations. These include Director of Research and Policy at Breast Cancer Campaign, Chief Executive of the Neurological Alliance (a membership organisation of 70 neurological organisations in England), Chief Executive of The Migraine Trust, and Interim Director of Services and Influencing at the Brain Tumour Charity UK.

“I am so pleased to have joined SAFE. In the brief time I have been within here I have been so impressed by the passion of the staff and the board, and their determination to see a reduction in the number of strokes in Europe and the impact they have on peoples lives. I will strive to raise the profile of stroke and stroke survivors and ensure all is done to achieve the stroke action plan for Europe. I am also really looking forward to getting to know and working with all our supporters and members.” said Arlene.

One of Arlene’s great strengths is alliance building, particularly around policy development and implementation, and in her role she will be co-chairing the implementation committee of the Stroke Action Plan for Europe, and playing a leading role in our partnership group. Arlene can be contacted at

“SAFE has been through a very thorough recruitment process, and from over 130 initial candidates we are thrilled that Arlene has agreed to join us. Her track record is very impressive and over the next few years with the need to ensure sustainability of SAFE whilst pursuing important objectives such as the Stroke Action Plan for Europe and the strengthening of stroke associations in each country of Europe we know we will benefit from her leadership. The appointment of a Director General is a bold step and demonstrates SAFE’s belief that stroke care and the needs of stroke survivors must be pushed higher up the agenda.” stressed Jon Barrick, SAFE President.

SAFE’s new Director General commenced in post on the 12th August 2019

Testimonial Exhibition at the World Stroke Congress October 2018

Written by Sarah Belson, published on

We want to make sure that the voices of people affected by stroke are heard throughout the Congress in an exhibition of stroke survivor, family and caregiver testimonials.

The 11th World Stroke Congress will focus on the latest developments in stroke prevention, acute management and restorative care after stroke. Reducing the burden of stroke on people with lived experience and their family and care givers drives everything the World Stroke Organization does.

In previous years the visibility of people with lived experience of stroke has been promoted through art exhibitions, both physical and online, and a hobbies ebook. (more…)

Prevent, treat and support: An EU election manifesto for stroke survivors

Prevent, treat and support: An EU election manifesto for stroke survivors

The Stroke Alliance for Europe (SAFE) and the European Stroke Organisation (ESO) today launch their joint EU MEP Election Manifesto 2024. For the elections in June we are asking MEP candidates to support improving health across the EU with a focus on improving prevention, care and support of those affected by stroke across Europe. 

Every year, nearly 1.5 million people suffer a stroke in 32 European countries1. Stroke can be devastating – leading to death or life-long disability2, shattering the lives of victims and their loved ones. Those who survive will join the more than 9 million European stroke survivors who live with long term health, social, and financial impacts3. 

The EU Non-Communicable Disease Initiative, Healthier Together, launched by the European Commission in 2022, provides opportunities for policy action that both EU-level and national policymakers should build on. We call upon all EU level policymakers, to prioritise stroke in health policies, to support member states to develop national stroke plans and lead research into the under-examined areas of stroke. 

Following the principles of the Stroke Action Plan for Europe, SAFE and ESO are calling for the implementation of the following policy proposals: 

Prior to a stroke  

  • Primary prevention and risk factor control 
  • Implement legislation for public health interventions 
  • Implement risk factor screening and treatment programmes 

Amidst the stroke 

  • Quality of care and stroke management 
  • Ensure equal access to acute stroke care 
  • Establish a quality improvement system for stroke services 

Life after stroke

  • Prevent further stroke and take care of those who had one 
  • Implement post-rehabilitation personal care plans that offer non-medical support 
  • Provide sufficient secondary prevention services 
  • Guarantee equitable access to rehabilitation prior and post discharge  
  • Develop a European framework of reference for stroke care quality 
  • Empower a dignified life after stroke 

Understanding stroke 

  • Provide sufficient research funding 
  • Improve stroke services with better data 
  • Encourage research into under-examined areas of stroke 

Click here for the full manifesto



  1. At what cost: The economic impact of stroke in Europe. University of Oxford for the Stroke Alliance for Europe (SAFE).  
  1. Sudharsanan, N., Deshmukh, M., & Kalkonde, Y. (2019). Direct estimates of disability-adjusted life years lost due to stroke : a cross-sectional observational study in a demographic surveillance site in rural Gadchiroli, India. BMJ open, 9(11), e028695. 
  1. Wafa, H. A., Wolfe, C. D. A., Emmett, E., Roth, G. A., Johnson, C. O., & Wang, Y. (2020). Burden of Stroke in Europe: Thirty-Year Projections of Incidence, Prevalence, Deaths, and Disability-Adjusted Life Years. Stroke, 51(8), 2418–2427. 
VALIDATE: Use of AI to advance personalised acute stroke treatment and to improve outcomes

VALIDATE: Use of AI to advance personalised acute stroke treatment and to improve outcomes

On Brain Awareness Week’s sixth day we are focusing on VALIDATE which is using artificial intelligence (AI) to personalise acute stroke treatment and improve outcomes.

In ischemic stroke treatment, timely access to appropriate interventions is paramount. While there are a range of effective therapies, navigating the intricacies of individual patient cases and not accurately considering each individual patient holistically can influence treatment outcomes and long-term quality of life. 

The VALIDATE team are aiming to improve this. By using datasets from thousands of patient profiles and state-of-the-art AI models, they are developing and validating a clinical decision support system. Central to this project is the creation of a new App which aims to provide additional information for clinicians by predicting the outcome of different treatment strategies. This system will empower healthcare professionals in choosing the optimal treatment strategy tailored to each patient’s unique circumstances. 

Beyond providing accurate prognosis, the success of the Validate App hinges on gaining the trust of clinicians and patients in its implementation. To achieve this, rigorous testing in real-world clinical settings will be conducted through observational studies, validating its efficacy and reliability. 

For stroke survivors, the long-term implications could mean personalised treatment options and improved outcomes and quality of life. 

For more information visit the VALIDATE website  

VALIDATE has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 777107. 

ANGIE: 3D patient brain models could increase access to thrombectomy

ANGIE: 3D patient brain models could increase access to thrombectomy

On Brain Awareness Week’s fifth day we are focusing on ANGIE, a research project supported by EU, which aims to develop micro-robots for targeted drug delivery, to dissolve blood clots in acute stroke treatment. 

To ensure accurate targeting, the research team have developed 3D-printed re-constructions of patient’s brain vessels based on their MRI scans. These brain 3D models are gaining recognition in the medical community for their ability to provide a realistic and safe environment for doctors treating stroke to hone their skills and facilitating earlier and more extensive training.  

Ultimately, this advancement could mean that more patients have access to more lifesaving procedures and go on to improve stroke treatment outcomes. 

More information can be found at

The project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement number 952152.

TRUSTroke – A new EU research project uses AI for predictive ischemic stroke management

TRUSTroke – A new EU research project uses AI for predictive ischemic stroke management

On Brain Awareness Week’s fourth day we are focusing on a new project called TRUSTroke which is using artificial intelligence (AI) to improve life after stroke for stroke survivors.  

Currently, the ability to predict potential future complications that may result in further hospital re-admissions post-stroke is limited. In response, TRUSTroke is developing an advanced technology to help healthcare professionals, patients, and caregivers manage both immediate and long-term effects of an ischemic stroke.  

Hear Dr. Carlos Molina, Head of the Stroke Research Group at Vall d’Hebron Research Institute, talk data safety and how his team are hoping to improve stroke outcomes in the future. 

More information can be found at

TRUSTroke has received funding from the European Union in the callHorizon-hlth-2022-stayhlth-01-two-stage under grant agreement No.101080564

TENSION trial reveals that thrombectomy is safe to use in patients who have had a severe stroke

TENSION trial reveals that thrombectomy is safe to use in patients who have had a severe stroke

Tension logo

TENSION is a large international study that was launched in 2018 with the hope to extend the benefits of a treatment called mechanical thrombectomy to stroke patients who are not currently offered this treatment option.

Thrombectomy is a treatment for certain types of acute ischaemic stroke. It uses very small devices to breakdown and remove the clot from the blood vessel in the brain. It can drastically reduce the level of post-stroke disability by restoring blood flow and therefore limits brain damage.

So far, thrombectomy trials have included highly selected groups of stroke patients – those with only small blood infarcts in the brain. This means that thrombectomy treated is limited and only available to small number of people.

The TENSION project aimed to determine if thrombectomy was safe to use in patients who had a severe stroke i.e. where a large blood clot had caused the stroke.

The trial results which were simultaneously unveiled at the World Stroke Congress and published in The Lancet, found that using thrombectomy can significantly help patients with severe strokes caused by blocked blood vessels in the brain. The study’s findings are likely to pave the way for broader consideration of this approach for a greater number of patients in the future.

“This is great news and if the results drives treatment guidelines updates, more patients should experience improved outcomes after a severe stroke” says Prof Dr Götz Thomalla, Principal Investigator of the study.

TENSION has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 754640.

Funded by the EU

Funded by the EU


ELASF will be accredited by EACCME® for healthcare professionals

ELASF will be accredited by EACCME® for healthcare professionals

The European Life After Stroke Forum on 11-12 March in Dublin, has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®). This means that healthcare professional delegates will be awarded 6.5 European CME credits (ECMEC®s) following the completion of our post-event survey.

Member spotlight:  Estonian Stroke Patients’ Society

Member spotlight: Estonian Stroke Patients’ Society

As part of our new member spotlight series, the Estonian team have shared their news with us.

Greetings from the Estonian Stroke Patients’ Society! 

Over the past six months, our organisation has undergone a period of huge change that has been touching almost every aspect of the Society. The reason for this overhaul was the realisation that we wouldn’t be able to create the organisation we wanted, by doing what we had always done. We needed to revert to basics and build a solid foundation to continue to build on to achieve our new vision, mission and goals. Here are some of the key actions we have undertaken to lay these foundations and continue to respond to the unmet needs of stroke survivors in Estonia: 

We launched a ‘Science and Development Team’ consisting of nine specialists from various fields, ranging from those with strategic and technical knowledge to health specialists, including one doctoral student in neuroscience. The goal of the team is to support our continued development, using their knowledge to drive activities, so that we are sustainable, the voice of stroke patients is heard, and we are considered as an equal partner in stroke in the future. 

We have also updated our visual look and feel with a new logo, a new colour scheme and a brand-new website. This new visual style has also been applied to our information materials, including a guide that supports stroke patients to access therapy.  

One of our proudest moments was hosting our information day, “Informed Patient”, on December 15. It was aimed at stroke patients and their needs, and featured lecturers from state institutions, medical facilities, and collaboration partners and it was all well received by stroke survivors. These efforts did not go unnoticed, the event received coverage in the media, including TV, newspapers, and health portals. 

To further solidify our commitment to patient advocacy, we were honoured to be re-elected as a member of the North Estonian Regional Hospital’s patient advisory board for the period 2024-2027. 

As we move into 2024, our Society will continue our focus on science, innovation, and collaborations with patient associations, both within Estonia and abroad.  

Elen Kirt, Estonian Stroke Patients’ Society 


If you have any questions about Estonia’s activities, please contact Elen Kirt

If you have news to share about your organisation, please e-mail Anna Scott on


European Life After Stroke Forum – Early bird registration ends 31 January

European Life After Stroke Forum – Early bird registration ends 31 January

We are now only two months away from the next European Life After Stroke Forum which takes place in Dublin on the 11-12 March. This second in-person life after stroke focussed event promises to be a vital platform for sharing insights, discussing the latest research, and delving into best practices in this often under-researched topic. We will be bringing together stroke survivors, caregivers, healthcare professionals, researchers and advocates to address life after stroke issues.
The last day to take advantage of early bird discounts on our registration rates is 31 January – don’t delay, click to register now.
SAFE members calls for EU to implement CVD health plan

SAFE members calls for EU to implement CVD health plan

Last week saw five SAFE members travel to Strasbourg to join the European Alliance for Cardiovascular Health (EACH) and European Stroke Organisation (ESO) to come together to jointly advocate for population-wide access to cardiovascular risk assessments and care pathways that focuses on individual patients needs and goals. SAFE and ESO have committed to ensure that any EU CVH plan will also include the principles of the Stroke Action Plan for Europe.