World Stroke Congress 2018: SAFE Actively Represented the Patient Voice in Europe

World Stroke Congress 2018: SAFE Actively Represented the Patient Voice in Europe

At this year’s World Stroke Congress In Montreal, Canada, SAFE was present through a variety of activities, from chairing stroke support sessions, being one of the key speakers and presenters, having a very well noticed and visited information stand, to actively participating in the World Stroke Day workshop and shaping the World Stroke Campaign in the years to come.

SAFE President Jon Barrick presented the SSOFT project, an online ‘how to’ toolkit for a range of advocating skills training, from setting up a stroke support organisation to leading PR and advocacy campaigns. This tool aims to build capacity of the European SSOs but can be used much broader to increase one world voice for stroke. His presentation sparked interest even among SSOs from other continents leading to an interesting exchange of ideas and suggestions for its further development. The SSOFT project will be completed by end of November 2018. Project team are looking at the future development such as translation into other languages, additional modules, global scope, said Barrick, but it is depending on funding. The presentation was broadcasted live on Facebook and the video can be found here.

In addition to the SSOFT project, SAFE had a chance to present the economic Burden of Stroke Report, scheduled to be published towards the end of 2019, as well as the SAFE & Industry Partner collaboration project on Life With Spasticity.

However, the Stroke Action Plan for Europe 2018-2030, a joint SAFE and ESO project got the majority of attention due to the fact that it just has been launched in May this year and is aimed to set the road map for stroke prevention, treatment and life after stroke in Europe in the next 12 years.

Successful examples and case studies from around the world, such as the one of the Swedish Stroke Registry and their latest project about caregivers and how they are coping with the consequences of strokes in their loved ones. The need for comprehensive and systematic follow up reviews for stroke survivors, after 3, 6 and 12 months was particularly stressed out.

Prof. Bo Norrving

We heard from Prof. Bo Norrving, University of Lund, Sweden, that one of 6 strokes was eradicated in Sweden over the last 6 years, meaning 14,000 in absolute number of strokes, and saving one billion euros. The reason for this success lays in treatment of TIA, atrial fibrillation and use of preventive medications. Stroke is probably the single most preventable disease of all. It may be that I am wrong, but I would like to be proven to be wrong, said Prof. Norrving.

During a separate open session on stroke as part of the non-communicable disease, Stephanie Mohl on behalf of American Heart and Stroke Association opened the conversation saying: Here we are in 2018 and we still need to talk about why patients need to in center of the healthcare, pointing towards all of the necessary efforts to convince the policy decision makers to listen to the patient voice in almost all parts of the world.

The way non-communicable diseases were addressed so far by the policy makers, the NCD acronym might as well stand for No Can Do, said Jon Barrick. This needs to be changed, but we need to be aware that people don’t put energy into hopeless campaigns, so stroke support organisations should be more active in showing perspectives and opportunities for stroke survivors and their carers.

SAFE was active on social media during the whole three days of the World Stroke Congress. For more information, please visit our social media accounts on Facebook and Twitter.

An open session on stroke and non-communicable diseases






The Stroke Action Plan for Europe launched at 2nd EU Stroke Summit

The Stroke Action Plan for Europe launched at 2nd EU Stroke Summit

The Stroke Action Plan for Europe 2018-2030 was launched today in the EU Parliament within the 2nd Stroke Summit.

Last year, in May 2017, SAFE launched the Burden of Stroke Report which unveiled shocking disparities between and within European countries along the entire stroke care pathway. In order to take action, SAFE and the European Stroke Organisation (ESO) decided to formalise their partnership which has led, after extensive consultation and tireless work, to the creation of the Stroke Action Plan for Europe 2018-2030.

This document sets important targets covering seven key pillars, from primary prevention to life after stroke. The report was launched today at the 2nd Stroke Summit in the European Parliament in front of around 70 key stakeholders including patients, healthcare professionals and policy-makers. The event was co-hosted by MEP Elena Gentile (S&D, IT), who showed her support to stroke survivors and stroke-related issues across Europe.

All the speakers welcomed the Stroke Action Plan and saluted the effort made by SAFE and ESO in making the Stroke Action Plan for Europe possible. It provides a clear road map and outlines recommendations and targets for 2030 so that all relevant stakeholders take action to improve the stroke care pathway and reverse the current trends.

Currently, an increase of 34% in the absolute number of strokes is expected by 2035 in Europe, along with a 45% increase in the number of stroke deaths, and a 25% increase in the number of survivors living with the long-lasting effects of stroke. Action needs to be taken to prevent stroke more efficiently, provide timely and adequate treatment and rehabilitation to those who need it, and last but not the least, to improve the lives of stroke survivors and their families across Europe by providing the right level of support in their Life After Stroke. (more…)

Stroke Medical Experts and Stroke Advocates Present a Joint Plan to Combat Stroke

Stroke Medical Experts and Stroke Advocates Present a Joint Plan to Combat Stroke

Stroke Action Plan for Europe 2018-2030

Basel and Brussels, 11 May 2018 – Just one year after signing a Memorandum of Understanding, the European Stroke Organisation (ESO) and the Stroke Alliance for Europe (SAFE) are proud to present the “The Stroke Action Plan for Europe 2018-2030”, with the aim of significantly improving stroke care and Life after Stroke for the millions of people expected to have strokes over the next 12 years.

ESO and SAFE will present the Stroke Action Plan for Europe to the medical world for the first time in a joint session at ESOC in Gothenburg on Thursday, 17 May. In addition to speakers from ESO and SAFE, the World Health Organisation (WHO) perspective on Joining Forces in Combating Stroke in Europe will be presented. (more…)

Action Plan for Stroke in Europe 2018-2030: The draft document now open for comments

Action Plan for Stroke in Europe 2018-2030: The draft document now open for comments

On behalf of the Action Plan Steering Committee, we cordially invite you to contribute with your valuable comments & input on the Action Plan for Stroke in Europe Document.

Please click here to comment on the seven domains and the translational research priorities. The platform is opened until 11 March 2018.

Please click here to follow the instruction on google Drive for commenting.

We would like to encourage as many people as possible to get involved and help SAFE and ESO in shaping up recommendations for stroke prevention, treatment and rehabilitation from 2018 to 2035.


The importance of the SAFE and ESO Memorandum of Understanding

The importance of the SAFE and ESO Memorandum of Understanding

Two of the most influential bodies in Europe concerning stroke care are the European Stroke Organisation known as ESO, and the Stroke Alliance for Europe, commonly known as SAFE. And these two have joined forces earlier this year to support awareness, prevention and advocacy for improved stroke research and treatments. Stroke patients and those looking after them need to know that they have the safety, choice and empowerment as the guiding principles of care.

Please watch below the interview with Dr. Valeria Caso, neurologist from the University of Perugia, Italy, the President of ESO and John Barrick, the patient advocate and President of the Board of SAFE, the only European-wide alliance of stroke support organisations.
The full-length video is available if you click on the photo. (more…)