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…)
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/
Oct 29, 2024
On World Stroke Day, we are bringing attention to two groundbreaking European stroke research projects. One of these, the ANGIE project, funded by the EU Horizon 2020 programme, focuses on an innovative approach to treating ischemic strokes—strokes caused by blood clots that block blood flow to the brain.
Current treatments, like the drug rtPA, dissolve clots but must be administered in large doses, increasing the risk of dangerous side effects. To address this, researchers, led by Principal Investigator Professor Salvador Panè, developed tiny dissolvable microrobots that can be guided through blood vessels using magnetic fields. These microrobots deliver the drug directly to the clot, making treatment more precise and reducing risks.
“This is a significant leap forward in targeted drug delivery,” said Professor Panè, while Arlene Wilkie, Director General of the Stroke Alliance for Europe, added, “We look forward to seeing this technology transform stroke care and improve patient outcomes.”
This breakthrough offers hope for more effective and safer stroke treatments, potentially improving recovery rates and reducing long-term complications.
The project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement number 952152.
More information can be found at www.h2020-angie.eu
Oct 17, 2024
Have you or someone you love experienced a stroke? Now is your chance to make your voice heard!
We are excited to announce, for the very first time, a new abstract category at the European Life After Stroke Forum designed specifically for those with lived experience of stroke.
Whether you are a stroke survivor, a caregiver, or someone close to a stroke survivor, this is your opportunity to share your insights and strategies with others. Our goal is to provide a platform where your voice can inspire, inform and empower others
We are inviting submissions with the chance to present a 10-minute oral presentation or a poster presentation at the event in Prague.
Why submit?
- Share your experience and make a difference in the stroke recovery community.
- Help others by sharing strategies and insights based on your personal journey.
- Contribute to a growing body of knowledge about life after stroke.
Key details:
🗓️ Submission deadline: 15 November 2024
📅 Forum dates: 10-11 March 2025
📍 Location: Prague, Czech Republic
Click here to find out more
Jul 23, 2024
The European Federation of Neurological Associations (EFNA) has launched a new survey to assess and quantify the invisible issues affecting neurology patients and caregivers in Europe.
The aim is to identify, measure and report on these invisible issues (for example pain, stigma, fatigue) as faced by those affected by neurological conditions, either as patients or caregivers. Data generated through this survey can be used to create awareness of these issues and to advocate for change to address them.
This survey is open to anyone over the age of 18 who is living with a neurological condition, or who is carer to someone living with a neurological condition, that resides in Europe. It is available in 8 languages: English, French, German, Spanish, Portuguese, Italian, Polish and Romanian.
Findings from the survey will be published on the EFNA website later this year, and included for presentation at the next meeting of the MEP Interest Group on Brain Health and Neurological Conditions.
The survey will be open until 30/08/2024.
Click to respond to survey.
Jul 9, 2024
We are pleased to announce that our third in-person European Life After Stroke Forum in Prague is now open for registrations and abstract submissions.
The Forum is a unique event where healthcare professionals, researchers, policymakers and those affected by stroke can come together to address the issues of life after stroke. Our programme will be filled with the latest research and best practice, with the voices of people with lived experience at its heart.
We are actively seeking abstracts in two categories:
1. Scientific abstracts – share your stroke-related research, whether it’s ongoing or completed.
2. Services abstracts – have you developed innovative practices in life after stroke? It’s your opportunity to showcase your experiences and inspire others with your ideas.
Submission deadline: 7 October 2024
May 22, 2024
We are pleased to announce that the third in-person European Life After Stroke Forum will take place in Prague on the 10-11 March 2025.
The Forum is a unique event where healthcare professionals, researchers, policymakers and those affected by stroke can come together to address the issues of life after stroke. Our programme will be filled with the latest research and best practice, with the voices of people with lived experience at its heart.
Abstract submissions and registrations will open in July, sign up to our ELASF newsletter here to be the first to receive more details.
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