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 13, 2023
We launched a research report at the European Life After Stroke Forum (Friday 10 March) that reveals the long-term support to meet the needs of stroke survivors in Europe is severely lacking.
A life saved is a life worth living – the unmet needs of stroke survivors in Europe, is a comprehensive review and analysis of all the research on the needs and unmet needs of stroke survivors.
‘A life worth saving must also be worth living but our report shows that even basic things like access to ongoing rehabilitation or mental health support is a constant struggle for people who have had a stroke. All too often service provision and support stop a few weeks after someone has a stroke, but their needs persist.’ Arlene Wilkie, Director General, Stroke Alliance for Europe
Kings College London, who carried out the review, found over 80 distinct issues, where stroke survivors have said that their needs are not being met: from the need for ongoing physiotherapy to promote mobility; or psychological support to help prevent depression. The report also covered the need for better inclusion in social and community life and highlighted the often overlooked needs of informal carers.
‘In my long-term, still ongoing, recovery I have a strong need for continued physiotherapy and occupational therapy. It goes without saying, that for this to happen there is a need for financial resources.’ Jurg, stroke survivor, Switzerland
Read the summary report
European Life After Stroke Forum
Mar 13, 2023
It is Brain Awareness Week this week (13 to 19 March) and we will be marking the occasion by sharing the importance of research in stroke by promoting EU-funded research projects that we are involved in.
Over the next few days, we will share news and insights into exciting stroke research in Europe.
Follow us on social media at @StrokeEurope (Twitter) and @SAFEStroke (Facebook), #BrainAwarenessWeek.
We will be highlighting three innovative projects:
- ANGIE – @ANGIE_h2020
- RESQ+ – @strokecareresq
- VALIDATE – @VALIDATEproject
Feb 28, 2023
The Essentials of Stroke Care was created to be a guide for stroke health professionals and planners. This latest version is for the general public and lays out what care and support every stroke survivor should receive.
This guide provides stroke survivors, their relatives, carers, and advocates with a checklist against which they can assess the quality of their care.
It includes the latest information and resources to help those affected by stroke.
Download a copy at actionplan.eso-stroke.org/wp-content/uploads/2023/02/SAP-E_Lay-Version_Essentials-of-Stroke-Care.pdf
Feb 28, 2023
We are pleased to confirm our full programme for the European Life After Stroke Forum on Friday 10 March in Barcelona, Spain.
About the Forum
The Forum is the place to find the latest evidence and research in life after stroke, as we all know, a neglected area of stroke care. Our aim is to build the life after stroke healthcare, research and patient community, stimulate debate and build our collective knowledge in life after stroke. The overall goal is to improve the quality of life after stroke for the nine million people living with stroke in Europe.
Programme overview
Our forum programme covers a range of topical issues in life after stroke and will include keynote presentations by eminent speakers supplemented by contributed talks and a poster session.
09.15-09.30 |
Open |
09.30-10.45 |
Plenary 1 – The focus on life after stroke |
10.45-11.30 |
Coffee/exhibition/guided tours/ poster talks |
11.30-12.30 |
Parallel 1 – Driving after stroke |
|
Parallel 2 – Debate: Stroke survivors should be empowered to live life well |
|
Parallel 3 – Intimacy, relationships and sexual wellbeing after stroke |
|
Parallel 4 – Physical exercise after stroke |
12.30-13.40 |
Lunch/exhibition//guided tours/ poster talks |
13.40-14.55 |
Plenary 2 – Secondary prevention |
15.00-16.00 |
Parallel 5 – Driving after stroke |
|
Parallel 6 – Highest scoring abstracts |
|
Parallel 7 – Physical exercise after stroke |
|
Parallel 8 – Intimacy, relationships and sexual wellbeing after stroke |
See our final programme at bit.ly/3GeAgvr
There are still a few remaining places available at bit.ly/3UDIuli
Feb 21, 2023
The European Life After Stroke Forum on Friday 10 March, Barcelona, has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®).
This means that Forum participants will be awarded four European CME credits (ECMEC®s).
There is still time to book your place at the event as there are a limited number of places still available.
Book at http://bit.ly/3UDIuli
More details on the Forum Programme at http://bit.ly/3GeAgvr
Feb 14, 2023
All our speakers for the European Life After Stroke Forum are now confirmed.
We are pleased to bring you an exciting line-up of topical parallel sessions to complement our plenaries at our Forum in Barcelona on 10 March.
The parallel events will cover issues from sex and intimacy, physical activity to driving post stroke, and will include a debate on empowering stroke survivors to live life well as well as a session showcasing the highest scoring abstracts.
There is still time to book your place as we have a limited number of places still available.
Book at http://bit.ly/3UDIuli
More details on the Forum Programme at http://bit.ly/3GeAgvr
Feb 7, 2023
If you have not booked your place at our first European Life After Stroke Forum in Barcelona, watch this short clip to learn more about the event and why you should join us.
More information about the programme can be found at http://bit.ly/3GeAgvr
Register now at http://bit.ly/3UDIuli
Feb 7, 2023
The European Stroke Organisation Conference (ESOC) is Europe’s leading forum for advances in research and clinical care of patients with cerebrovascular diseases.
ESOC 2023 has a high quality scientific programme, including major clinical trials, state-of-the-art seminars, educational workshops, scientific communications of the latest research, and debates about current controversies.
Share with your networks.
Promotional Toolkit
Jan 30, 2023
Benefit from early bird rates for our European Life After Stroke Forum by booking you place today!
We have a great line up of speakers including stroke survivors who will be sharing research, evidence and information on post stroke treatment, care and services.
Why should you join us? Watch this video to find out https://youtu.be/bahOR4zFruk
Book now at http://bit.ly/3UDIuli
Programme details at http://bit.ly/3GeAgvr
Jan 30, 2023
Sign up to this free webinar on Thursday 2 February at 17.00 – 18.30 CET, when one guideline and one expedited recommendation will be presented.
Register now to receive first-hand information on this important area.
Programme
Welcome – Diana Aguiar de Sousa & Keith Muir
Moyamoya vasculopathy: epidemiology, clinical presentation, and natural course – Vijeya Ganesan
ESO Guideline on Moyamoya angiopathy – Dominique Hervé
ESO Expedited Recommendation on Tenecteplase for acute ischaemic stroke – Sonia Alamowitch
The next frontiers for Tenecteplase in stroke – Bijoy Menon
Live Q&A – Georgios Tsivgoulis, Anna Bersano and all speakers
More details can be found at https://eso-stroke.org/guidelines/eso-guideline-webinar/
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