Sep 23, 2024
We are delighted to let you know that the General Assembly in June elected Hariklia Proios as our President for a second term. Hrvoje Jurlina was elected as our new Vice President. Congratulations!
Read what their ambitions are for the coming years.
Hariklia Proios, SAFE President
What is your background?
I’ve spent the last 25 years of my life working to support people affected by stroke, something that has taken me across both the U.S. and Europe. My background is in speech-language, and I am a professor at the University of Macedonia and recently I am also at the CSD department at Adelphi University in New York.
The most rewarding part has been creating and running support groups wherever I go. It’s been such a privilege to work with people from all walks of life, helping them navigate the challenges that come with life after a stroke. I’ve also had the honour of serving as President of SAFE for the past three years. Working with our incredible team to advocate for stroke survivors has been a really rewarding experience.
What is your vision for the future of SAFE?
Looking ahead, my vision for SAFE is simple: I want to keep fighting for stroke survivors. My goal is to ensure that no matter where they live or what resources they have, every stroke survivor gets the care, support and respect they deserve. The disparities in stroke care across different European countries are heartbreaking – some places provide incredible support, while in others, people are left to navigate recovery on their own. That’s something I’m determined to work to change.
We have already made great strides towards this with our work on the Stroke Action Plan for Europe and our Life After Stroke Forum. In the next chapter, we need to build on this work with our member stroke support organisations, working together to deliver campaigns, advocacy, research and raising awareness.
Hrvoje Jurlina, SAFE Vice President
What is your background?
I am a doctor of Family Medicine at a Community Health Centre in Zagreb. My professional journey took a profound turn ten years ago when, at the age of 39, I experienced a stroke at work. That moment became a catalyst for my commitment to improving the needs of stroke survivors, as well as the needs of their families and caregivers.
Five years later, my father suffered a massive stroke and I became his primary caregiver until his passing ten months later. This experience reshaped my perspective on stroke, not just as a survivor, but as someone who intimately understands the emotional, physical and logistical challenges faced by caregivers.
I was recently appointed as Vice President of SAFE and serve as Second Vice President of the Croatian Stroke Society. These roles allow me to merge my personal experiences with my professional expertise, offering a unique, three-dimensional perspective on stroke care and advocacy.
What is your vision for the future of SAFE?
My vision for the future of SAFE is to continue being the strong voice for stroke survivors, advocating for improvements within healthcare systems to ensure comprehensive recovery. We aim to educate about care options and empower stroke survivors and their families by advocating for their rights. SAFE holds a unique position with our ability to unite all the key players, healthcare providers, social services, patient advocate groups, and the families of stroke survivors, into a coordinated and collaborative approach to post-stroke care. I believe that with continued advocacy and collaboration, we can create a healthcare environment that supports stroke survivors through every stage of recovery, offering them not just survival, but a meaningful quality of life.
Oct 21, 2020
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
President
On behalf of the Board of SAFE
Feb 20, 2020
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.
SAVE THE DATE – EUROPEAN LIFE AFTER STROKE FORUM, 19 NOVEMBER 2020, BARCELONA, SPAIN
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
Jan 5, 2020
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
Aug 23, 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 arlene.wilkie@safestroke.eu
“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.
Feb 13, 2018
Written by Sarah Belson, published on worldstrokeorganization.blogspot.com
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…)
Mar 11, 2025
On Brain Awareness Week’s third day we are focusing on another new EU-funded research project called UMBRELLA which aims to make stroke care faster, more effective and more accessible. The project, co-led by Vall d’Hebron Research Institute (VHIR) and Siemens Healthineers, will use advanced technology, artificial intelligence (AI) and real patient data to help doctors make better treatment decisions, improve recovery and prevent future strokes.
What is a stroke?
A stroke happens when blood flow to the brain is blocked by a clot (ischemic stroke) or when a blood vessel bursts (haemorrhagic stroke). When this happens, brain cells start to die quickly, which can cause serious damage or disability. Fast diagnosis and treatment are critical to save lives and improve recovery.
How UMBRELLA is setting out to improve stroke care
- Faster diagnosis & treatment – UMBRELLA will help speed up stroke diagnosis and treatment, reducing delays that can lead to disability.
- Personalised care – Every patient is different. UMBRELLA will use data from seven European hospitals to develop AI models that support doctors in providing more personalised treatments.
- Better access to care – Not everyone gets the same level of care, especially in remote areas. UMBRELLA will introduce virtual recovery tools and wearable devices to help more patients.
- Understanding unknown strokes – About 1 in 4 strokes has no clear cause. UMBRELLA will study these cases to find better ways to prevent and manage strokes.
A strong team across Europe
The UMBRELLA project brings together hospitals, researchers, not for profit organisations and companies from Spain, Italy, Belgium, Switzerland, Germany and the Netherlands. Dr Carlos Molina, Head of the Stroke Research group at Vall d’Hebron Research Institute (VHIR) and scientific leader of this project, says the project will set new standards for stroke care and improve lives.
“We are proud to be part of this project, which will help stroke patients and survivors across Europe,” says Arlene Wilkie, Director General of SAFE.
By improving diagnosis, treatment and prevention, UMBRELLA aims to transform stroke care and improve the quality of lives thousands of people.
To learn more about the project:
Click to visit the Umbrella website
Or contact SAFE on research@safestroke.eu
This project is supported by the Innovative Health Initiative Joint Undertaking (IHI JU) under grant agreement No 101172825. The JU receives support from the European Union’s Horizon Europe research and innovation programme and COCIR, EFPIA, Europa Bío, MedTech Europe and Vaccines Europe.
Mar 10, 2025
On Brain Awareness Week’s first day we are focusing on POC4Triage which is using advanced technology and artificial intelligence (AI) to improve the speed and accuracy of detecting stroke and other cardiorespiratory conditions on route to hospital.
POC4Triage, will transform emergency medical care by improving the speed and accuracy of diagnosing life-threatening conditions, so that patients receive timely treatment and survive.
The project is developing four innovative, portable medical devices designed to provide ambulance professionals and doctors with fast access to crucial diagnostic information. The devices will connect to a Device Hospital Connectivity Platform, which integrates seamlessly with hospital systems and uses AI to process and translate data from multiple sources.
The POC4Triage project brings together medical experts, device developers, patient advocates, data scientists and health economists in one project. The research aims to ensure that patients get the right treatment faster, to increase their survival rates and improve long-term outcomes.
Click to view video for more information about the devices
Video 1
Video 2
Or click to visit the POC4TRIAGE website
Or contact SAFE on research@safestroke.eu
POC4Triage has received funding from the European Union under grant agreement No 101137358.
Mar 7, 2025
European Life After Stroke Forum – A European conference on Life After Stroke in Prague – Because acute care is only the beginning
On March 10-11, 2025, Prague will host a major pan-European conference, the European Life After Stroke Forum, marking the first time this event has taken place in a Central or Eastern European country.
The event is organised by Stroke Alliance For Europe (SAFE), a Brussels-based nonprofit established in 2004, bringing together 36 organisations from 30 European countries. SAFE represents patient advocacy groups involved in supporting and caring for the more than 9 million people in Europe who have experienced a stroke.
This conference provides an opportunity for dialogue between professionals (doctors, physiotherapists, occupational therapists, psychologists, speech therapists and others) and the general public – stroke survivors, caregivers, policymakers, healthcare funders and other stakeholders. The event will showcase best practices and systemic improvements that can serve as inspiration for others and ultimately contribute to improving the lives of stroke survivors.
Among the leading experts attending the conference are Prof. Simona Sacco, President of the European Stroke Organization (ESO), Assoc. Prof. Nicola Hancock (UK) and many more. Representing the Czech Republic will be Assoc. Prof. MUDr. Aleš Tomek, Chair of the Cerebrovascular Section of the Czech Neurological Society and MUDr. Dagmar Součková, a member of the scientific committee for the conference. The event is also co-organized by Cerebrum, o.p.s., a Czech patient organisation supporting individuals with acquired brain injuries, which is a member of SAFE.
The conference will be held under the patronage of the Czech Minister of Health, Prof. MUDr. Vlastimil Válek, who will open the event.
Stroke in the Czech Republic: Progress and challenges
Every year, approximately 24,000 people in the Czech Republic experience a stroke. While stroke-related mortality has significantly decreased in recent decades – with the 90-day mortality rate now around 17% (ÚZIS) – challenges remain, particularly in post-stroke care.
Since the 2010, establishment of a well-functioning network of stroke centers, the Czech Republic has become one of the leaders in Europe for acute stroke care. It ranks highly in the number of patients receiving thrombolysis (a treatment that dissolves blood clots) and mechanical thrombectomy (a procedure to remove clots using a catheter in major brain arteries).
However, post-acute stroke care in the Czech Republic still has significant gaps that need to be addressed. The Czech Neurological Society, in collaboration with the Society for Rehabilitation and Physical Medicine, has prepared a new decree on long-term care, aimed at improving access to rehabilitation and follow-up treatment in specialised stroke outpatient clinics and rehabilitation centers. This will enhance interdisciplinary collaboration among speech therapists, psychologists, occupational therapists and other specialists involved in stroke care.
Assoc. Prof. Aleš Tomek will outline the objectives set by the Czech Ministry of Health, professional societies and patient organisations as part of the European Stroke Action Plan 2030. This includes efforts to improve treatment outcomes for patients with hemorrhagic strokes, where mortality remains high and to advance care for ischemic stroke survivors. He will also highlight the ongoing challenge of stroke awareness, emphasising that many people fail to recognise stroke symptoms and do not seek medical help in time.
However, the primary focus will be on life after stroke.
“It is time to improve secondary prevention to reduce the high rate of stroke recurrence. Acute care is just the beginning – we must also focus on enhancing patients’ lives after hospital discharge,” stated Ales Tomek.
Dr. Dagmar Souckova, Vice Chair of the Cerebrovascular Section of the Czech Neurological Society, added:
“After discharge from acute stroke care, we need to ensure structured follow-up by appropriate specialists in stroke outpatient clinics, along with multi-stage rehabilitation – whether inpatient or outpatient. Further, we must strengthen community programs and initiatives that facilitate patient reintegration into society, returning to active life, and improving employment opportunities. Stroke is not just a medical issue – it has serious social consequences, making it a broader societal challenge.”
The role of patient organisations
The Cerebrum organisation will also present its activities at the conference. As a nonprofit focused on supporting individuals with acquired brain injuries (including stroke, trauma and brain tumours), it operates a community center with the motto: “No one should have to face their illness alone.” Cerebrum is actively involved in awareness campaigns and offers advice to patients and caregivers.
Cerebrum also publishes educational materials for both stroke survivors and professionals. The latest publication, “A Guide to Group Speech Therapy”, developed in collaboration with the Icelandic patient organisation Heilaheill, was supported by the EEA and Norway Grants. The guide is available in both Czech and English and can be downloaded for free from www.cerebrum2007.cz/poradna.
Magdalena Pohnanova, Director of Cerebrum, emphasised the importance of patient organisations in healthcare:
“Patient organisations play an irreplaceable role in the healthcare system because healthcare is ultimately about the patients. Unfortunately, their significance is still underappreciated in the Czech Republic. I believe that thanks to SAFE and this conference in Prague, the value of patient organisations in the healthcare system will gain greater recognition.”
Feb 14, 2025
We are pleased to announce that we have achieved EACCME accreditation for continuing medical education.
“The European Life After Stroke Forum, Prague, Chech Republic 10/03/2025-11/03/2025, has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 6.0 CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he / she actually spent in the educational activity.”
“Through an agreement between the Union Européenne des Médecins Spécialistes and the American Medical Association, physicians may convert EACCME® credits to an equivalent number of AMA PRA Category 1 CreditsTM. Information on the process to convert EACCME® credit to AMA credit can be found at https://edhub.ama-assn.org/pages/applications.
“Live educational activities, occurring outside of Canada, recognised by the UEMS-EACCME® for ECMEC®s are deemed to be Accredited Group Learning Activities (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada.”
Feb 12, 2025
Do you want to be part of shaping the future of life after stroke care and research?
Join us at the European Life After Stroke Forum (ELASF) for an exclusive 90-minute interactive workshop, where we will bring together a diverse group of individuals, including stroke survivors, caregivers, clinicians and researchers from across Europe.
This is your chance to share ideas, experiences and perspectives on what wellbeing after stroke truly means. Together, we will identify priorities and explore ways to make wellbeing a fundamental part of future care and research.
Spaces are limited due to the interactive nature of this session, application deadline is 21 February.
Successful applicants will be contacted by the ELASF team by 28 February.
Let’s shape the future of life after stroke together.
Register your interest here
Feb 10, 2025
The European Life After Stroke Forum is a unique platform where healthcare professionals, researchers, policymakers and those affected by stroke can come together to address the issues of life after stroke. Join us in Prague on the 10-11 March to be part of the conversations that drive change in life after stroke.
Early bird discounts ends on the 14 February 2025.
Click to register
Dec 4, 2024
We warmly welcome the Council of the European Union’s conclusions on improving cardiovascular health, a critical step in addressing one of the most significant public health challenges in Europe. Cardiovascular disease, which includes stroke, is the leading cause of death in the EU, affecting millions of citizens and costing the economy billions annually.
This Council conclusion is important as is represents a collective agreement among EU Member States on key issues of concern and recommended actions. These can influence the work of Member States and the European Commission.
We commend the Council’s call for action, urging Member States to prioritise cardiovascular health. This includes expanding screening programs for risk factors, addressing social and environmental determinants of health and improving access to timely diagnosis, treatment and rehabilitation. These measures are vital for those at risk of stroke and for individuals already living with the consequences of stroke.
We now call on the European Commission and the Commissioner for Health to take decisive action by developing a new European Cardiovascular Health Plan supported with adequate resources. Such a plan would guide Member States in implementing the Council’s recommendations, from enhancing preventive care and early detection to advancing management and rehabilitation practices.
Arlene Wilkie, Director General of the Stroke Alliance for Europe, said: “These Council conclusions represent a vital step forward for the millions of people across Europe living with the effects of stroke and those at risk. Member States and the European Commission now have the mandate to prioritise cardiovascular health and transform lives. This would not only reduce the devastating burden of cardiovascular disease it would also improve the quality of life for millions of Europeans. Early intervention and improved care can prevent strokes, save lives and support survivors in their recovery, enabling them to live healthier, more active lives”.
“We look forward to working with policymakers, healthcare professionals and civil society to turn these ambitions into reality for all those at risk of stroke and those affected by stroke. Together, we can ensure that stroke and cardiovascular health becomes a priority across Europe, with a comprehensive plan to support both prevention and care”.
Notes:
We have been working in partnership with the European Alliance for Cardiovascular Health to raise awareness of stroke and to call for greater focus on cardiovascular health at the EU level. For the EACH statement on the Council conclusions please click here
The final Council conclusion can be found here.
Dec 3, 2024
We are pleased to announce that the programme for the ELASF 2025 in Prague is now live on our website. Our scientific committee has worked hard to develop a programme that is filled with the latest research and best practice, with the voices of people with lived experience at its heart.
Programme topics include secondary prevention, Stroke Action Plan for Europe, technological innovations, communication and quality of life for women after stroke.
Please click to view.
Oct 29, 2024
We are pleased to announce that we are relaunching our Stroke Prevention website on World Stroke Day 2024. It has had a complete overhaul and now includes the latest facts and research on how to protect your brain and prevent stroke.
You will find essential information on risk factors, along with practical steps individuals and governments can take to reduce stroke risk, preventing a first and any further strokes. The content is designed for everyone, written in simple, non-medical language.
Oct 29, 2024
PRESTIGE-AF, an EU Horizon 2020-funded project led by Imperial College London, explored whether stroke survivors with atrial fibrillation (a heart condition that causes an irregular heartbeat and raises your risk of a serious stroke) should receive blood-thinning medication. To make this complex research more understandable, the team created Escape the Clinic!, an innovative pop-up escape room designed to educate the public about clinical trials in an engaging and fun way.
The escape room, featured at 12 events across Europe from February 2023 to August 2024, including the European Life After Stroke Forum, had over 500 participants racing against the clock to enrol a patient in a clinical trial. Along the way, they learned about the importance of trials in advancing stroke care.
“We included Escape the Clinic! at the European Life After Stroke Forum in Dublin in March this year, and it was a great success. It drew in stroke survivors, academics and healthcare professionals to engage with stroke research in a really interesting way. By making complex research concepts more accessible, we could inspire more stroke survivors to take a more active role in shaping the future of their care,” said Arlene Wilkie, Director General of Stroke Alliance for Europe.
Learn more about the project and how to create similar activities by downloading the full case study.
PRESTIGE-AF has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 754517.
You can find more information about the research project here: https://www.prestige-af.org/
Page 1 of 7812345...102030...»Last »
