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Stroke Action Plan for Europe: Supporting stroke survivors and their carers to get #UpAgainAfterStroke

Stroke Action Plan for Europe: Supporting stroke survivors and their carers to get #UpAgainAfterStroke

Today is World Stroke Day, October 29th. Though stroke may feel isolating, there are millions of survivors in the world. Stroke recovery is a community effort, and there needs to be a more clearly defined pathway from prevention to rehabilitation.

Stroke Action Plan for EuropeTaking that into account, SAFE is proud to announce the publishing of the Stroke Action Plan for Europe 2018-2030. This document is a result of collaborative work between SAFE and European Stroke Organisation (ESO), being an intersection and a point of confluence for large experiences coming from SAFE’s members, stroke survivors and patient advocates from one side and medical experts, specialised in stroke and stroke related research.

“With this great collaboration we are trying to make sure more attention is paid to the whole stroke care pathway. Fatigue, long-term pain, finance, work or unemployment, relationships, aphasia- these things are usually not in front of mind for many medics or politicians and healthcare decision makers. Therefore, the addition of Life After Stroke domain as one of the Stroke Action Plan’s priorities is an important step forward. SAFE is working with ESO to ensure that we jointly engage with politicians and decision makers until the whole action plan is being implemented” said Jon Barrick, SAFE President.

This year, around 610,000 people in the European Union will have a stroke, and, although the figures are patchy, at least 170,000 people in non-EU European countries will have one. That is more than one stroke a minute. Their stroke could be devastating – leading to death or life-long disability, shattering their lives and those of their loved ones. Those who survive their stroke will join the millions of stroke survivors across Europe who live with the health, social and financial impacts.

“Long term commitment and attention to the needs and rights of stroke survivors and their caregivers will contribute to better health and wellbeing, outcomes, increase independence and reduce demand on healthcare, social and welfare systems” concluded Barrick.

The popular version of the Stroke Action Plan for Europe 2018-2030 can now be downloaded from HERE.

The scientific version of this document is also available starting from today and can be downloaded from the following LINK.

Invitation to participate in a Stroke Association webinar on peer support

Invitation to participate in a Stroke Association webinar on peer support

Stroke clubs and groups provide essential long-term peer support to stroke survivors, carers, family and friends. They provide an opportunity for those who have been affected by stroke to rediscover previous skills, learn new skills, regain confidence, increase independence and socialise with other individuals who have had similar experiences.

Stroke Association has received funding for our Hand in Hand peer support programme. This is an ambitious, five-year project enabling us to scale our experience, expertise and knowledge of peer support for the benefit of local stroke communities.

As part of this programme, we would like to share some of our experience, expertise and knowledge of peer support with other SAFE members, and to hear about your experiences and insights in delivering peer support. We will hold a webinar on Monday 26th March 2018, 11am BST, 12pm CET (more…)

Bringing the patient experience to the Angels Initiative

Bringing the patient experience to the Angels Initiative


SAFE is joining the Angels Initiative

Brussels, 20th December 2017: The mission of Boehringer Ingelheim’s (BI’s) Angels Initiative is to increase the number of patients who can be treated in stroke-ready hospitals and to optimise the quality of treatment in all existing stroke centres. The Stroke Alliance for Europe (SAFE) has partnered with BI to support this ambitious project and will add an important dimension by bringing the patient perspective. SAFE’s involvement will mean patient-focused information will be available to patients and their carers as soon as they arrive in all stroke units.

-Information on the stroke care pathway is crucial for stroke survivors and their carers both while they are in hospital and in the following months, says Jon Barrick, the President of SAFE. With SAFE joining Angels Initiative we will be making information available to them in the hospitals. The patient-focused materials will include a list of national, regional and local stroke support organisations with their contact details in order that patients and carers can access further support in the months and years following their stroke. (more…)

After Zagreb Working Conference, SAFE has 32 member organisations

After Zagreb Working Conference, SAFE has 32 member organisations

The Working Conference and General Assembly of the Stroke Alliance for Europe (SAFE) took place at the Westin Hotel, Zagreb from 6-8th December, 2017. This was the most successful SAFE annual conference to date, with around one hundred delegates from more than 30 European countries.

SAFE delegates have approved at the General Assembly two new applications for membership that have been previously approved by the board.  These are from the Irish Heart Foundation and Beyinder Turkey.

A stroke support organisation Sdružení pro rehabilitaci osob po cévní mozkové příhodě (Czech Republic) have been reinstatement as a SAFE member.

France AVC did not comply with membership requirements during the 2017 and therefore did not become a full member until now. At this General Assembly, they have submitted the missing documents and the delegates confirmed their membership. (more…)

Medics: There is an expected increase of 34% in number of strokes

Medics: There is an expected increase of 34% in number of strokes

Please read below an excerpt from an article published in Croatian online portal about the SAFE Working Conference 2017.

Although the number of deaths caused by stroke is in decline, there are more people who survive an acute stroke, but there are also others who remain with a permanent disability…

Stroke Alliance for Europe (SAFE) is organising an Annual Working Conference in Zagreb, Croatia, from 6-8th December 2017. There will be more then 100 delegates from over 30 European countries. The Working Conference will cover topics such as current and future projects aiming to reduce the number of new strokes in Europe and enable better life for stroke survivors and their families with the consequences of this disease.

SAFE started a project called „Stroke Support Organisation Faculty Tool- SSOFT“. At the moment, the focus is on building an online platform for education of stroke support organisations and individuals about stroke and how to advocate for improvement of the prevention, treatment and post-stroke care.
In 2017, SAFE has finished a big project “Burden of Stroke in Europe”, in which Croatia took an active part.

Please read the whole article here.


WAKE UP Clinical Trial Update

WAKE UP Clinical Trial Update

WAKE-UP is a European multicentre investigator-initiated randomized placebo-controlled clinical trial of MRI based thrombolysis in acute stroke patients with unknown time of symptom onset, e.g. due to recognition of stroke symptoms on awakening.

Stroke is a devastating disease leading to death and disability in large numbers of patients with massive social and economic impact. Intravenous thrombolysis with Alteplase is available as effective and safe treatment of acute stroke within 4.5 hours of symptom onset. However, in about 20% of acute stroke patients time of symptom onset is unknown e.g. because symptoms are recognized when waking-up from sleep in the morning. This large group of patients is currently excluded from treatment with Alteplase only due to the missing information on the time of symptom onset. In preparatory work the WAKE-UP consortium has developed an innovative approach of using brain MRI as surrogate marker of stroke lesion age which may be used to identify stroke patients likely to benefit from thrombolysis.

The Project started in 2013. As of June 30, enrollment in the WAKE-UP trial was stopped following a decision by the Steering Committee. By the end of enrollment, 1,377 patients were enrolled in WAKE-UP with 501 patients randomized and 876 screen failures. The final meeting was held in Hamburg, Germany, in November 2017.

WAKE UP was led by an active and motivated consortium combining central trial management with decentralised organisation with national coordinators, with a clear communication structure and share of responsibilities, which led to the successful completion of the project.

WAKE-UP is a European collaborative research project launched by a consortium of academic and SME partners destined to improve the treatment of stroke patients. The core of WAKE-UP is an investigator-initiated randomized controlled trial of MRI based thrombolysis in patients waking up with stroke symptoms.

The objective of WAKE-UP is to test efficacy and safety of MRI-based intravenous thrombolysis with Alteplase in patients waking up with stroke symptoms or patients with unknown symptom onset. By this, WAKE-UP aims at providing a new safe and effective treatment option for acute stroke patients waking up with stroke symptoms.

The project is centrally coordinated by the Universitätsklinikum Hamburg-Eppendorf (Prof. Christian Gerloff; deputy coordinator: Dr. Götz Thomalla).


During the WAKE UP trial, imaging software (SONIA) was developed for the purpose of this project, yet this software can also be used even when WAKE UP trial is done, for other research projects in the future.

One of the collateral benefits of this project was that clinicians/ investigators were trained in reading MRI images, providing a learning opportunity for these stroke professionals in the interpretation of MRI in acute stroke diagnostics. Almost 400 investigators from eight European countries participated in a structured software-based training.

WAKE UP trial proved to be a good example on how to involve patients who are unable to give consent.

Repeated interim analysis of safety data from the trial and evaluation by the independent Data and Safety Monitoring Board already showed that the intervention performed in this trial was proven to be safe for patients.

The final results of the main research will be presented to the public in May 2018 at ESOC 2018 conference.

For further information, please visit the Wake-Up project’s web site.

WAKE-UP – The work leading to these results has received funding from the European Union Seventh Framework Programme (FP7/2007-2013) under grant agreement n° 278276.

Please see or download WAKE-UP update in English language or in languages from the following countries: