Two persons a day suffer a stroke in Iceland: HEILAHEILL is there to support the survivors and their families

Two persons a day suffer a stroke in Iceland: HEILAHEILL is there to support the survivors and their families

The new updated HEILAHEILL home page with purple color

The excellent performance of HEILAHEILL’s activities in Icelandic society 2017-2018, has had a good result in raising public awareness about the consequences of suffering a stroke with a special version and distribution of an impressive smartphone app.

By doing so, the association gained attention from the public, not only about the stroke itself, but also about the risk factors that lead to stroke trauma. Last year, the association has been in close cooperation with the media; the Organisation of the Disabled in Iceland, (which is the umbrella organization of most patient associations in the country); professionals; doctors; neurologists pioneering new procedures, thrombectomy and nurses at the National Hospital and also in health care centres throughout Iceland; the university community; health authorities outside the countryside and the government; employees of the welfare department; the Health Minister of Iceland, to raise awareness of stroke trauma.

The Minister of Health, Svandís Svavarsdóttir, delivers a financial contribution to Þórir (Thorir) Steingrímsson, chairman of HEILAHEILL.

HEILAHEILL is a non-profit organisation for people interested in cerebrovascular disease and has been member of SAFE since 2011.

The population of Iceland is only 345 thousand and about 0.10% are members of the association. Its activities cover the whole country and are based on raising awareness of stroke trauma and drawing the attention of the general public through the regular media; social media; our website (recently updated in purple); YouTube; publication of our magazine and leaflets, etc., and the use social media such as direct broadcasts of regular meetings on Facebook!

Meetings are attended by are well-known doctors, nurses, famous actors, singers, writers volunteers to increase public participation.

It is estimated that approximately 2 individuals suffer a stroke per day in Iceland. The association, in cooperation with the authorities and National Hospital and other health care institutions across the country, promotes healthcare responses in the “door-to-needle” campaign, now estimated to be approximately 40 minutes, improving from an estimated approximately 80 minutes last year! Our contribution is this special HEILAHEILL emergency line-app in smartphones, speeding up emergency services when someone has a stroke symptom, enabling the accurate location of the person through GPS location technology and getting information on who is asking for help, their age and gender and of course why the emergency call is needed. Today 1% of the population have already downloaded this app on their phone and the emergency staff states that 0.0051% of them have already used it!

Jon Barrick, president of SAFE, together with Kolbrún Stefánsdóttir, board member of SAFE and board member of HEILAHEILL and Þórir Steingrímsson, chairman of HEILAHEILL, at SAFE conference in Madrid in June 2018.

Iceland has the potential to be tight-knit, very tight-knit, because everyone knows more about each other than in other European countries.

The people are like a big, helpful family, who stand together, without discrimination on the grounds of national differences or nationality, gender or social status, ethnicity, colour or religion.

Stroke survivors find it easy to fight for their affairs within the current legislation and dare to meet the politicians who make significant decisions about the stroke. This small community is unique, surrounded by clean and untouched nature.

Because of our present position in this favorable environment, we know that we have every chance of doing better for stroke patients, ensuring prevention, treatment and rehabilitation. And we will do so!

You can try this Icelandic app by downloading it from your appsutilities, Applestore, Googleplay, Playstore, and more and look for HEILAHEILL and use the ID number of the company 6112942209 – but the emergency staff will not attend you unless you are in Iceland!

The first SAFE Regional Conference in 2018 held successfully in Madrid

The first SAFE Regional Conference in 2018 held successfully in Madrid

The first SAFE Regional Conference this year gathered 20 participants from organisations  covering Spain, Catalonia, Norway, Finland, Portugal, Greece, Iceland, Turkey,  Israel and Latvia.

The agenda was focused on SAFE’s activities in 2017 and 2018, with a special emphasis on current SAFE projects, such as the Stroke Action Plan for Europe 2018-2030, SAFE Angels Initiative, Life with Spasticity and the new upcoming project for raising awareness on stroke risk factors, Stop Stroke from Happening.

Jon Barrick, SAFE President gave an interesting overview of SAFE political activities aimed towards politicians and EU policy makers, shortly reflecting the Burden of Stroke Report presented in 2017 and how it led to the Stroke Action Plan document, in cooperation with ESO. The full document of the Stroke Action Plan for Europe 2018-2030 is expected to be released for public by September this year.

A special session of the meeting were dedicated to the World Stroke Campaign 2018 and it’s topic, Life After Stroke, as it is closely tied to SAFE’s core goals, such as improving life conditions and level of care for people who survived stroke and their families.

SAFE Project and Operations Manager, Victoria Brewer, gave an update on SSOFT project and helped participants perform a user testing of the existing SSOFT Modules 1 and 2.

Harriklia Proios, SAFE Board member from Greece, presented and update on EU funded research projects in which SAFE is involved as a member of consortium. Once again, the importance of research dissemination was stressed out, explaining why SAFE members should continue to take active part in dissemination activities.

SAFE Board member from Israel, Pnina Rosenzveig chaired a session with individual SSO’s feedback on national activities and next steps.

Finally, SAFE  had a guest workshop held by our sponsorship partner Boehringer Ingelheim. The workshop was about the next steps in the Angels Initiative project development, with a special focus on new and exciting branding ideas and approaches for a sustainable stroke awareness education of the target audience.

SAFE is appreciating support from the company Boehringer Ingelheim, given to us through an unconditional educational grant. The Boehringer Ingelheim is a sponsor of all this year’s Regional Conferences, the one just being held in Madrid, but also the upcoming two in Dublin (21st June) and Prague (28th June 2018).

All stroke survivors have to have access to ongoing rehabilitation services for as long as required

All stroke survivors have to have access to ongoing rehabilitation services for as long as required

Written by Jelena Misita, SAFE Awareness and Advocacy Manager

Prof. Valery Feigin, photo credits:

I first met Prof. Valery Feigin in person in Gothenburg this May, when he visited SAFE stand at ESOC 2018. I knew him, of course, from the literature, with his name coming across many references. According to his official biography, this was hardly any wonder, as he had published over 600 research articles over his career and his publications have been cited over 30,000 times, within his prime research interest fields- prevention and management of stroke, epidemiology and traumatic brain injury.

Imagine my surprise when he suddenly appeared at a patient support organisation stand, shook my hand and said he’s started a website for patient support in New Zealand. I just had to tell him that in stroke world, he is nothing short of a celebrity and that we will be honoured to help him spread the news about his latest project. The project is in fact being realised through the New Zealand Stroke Education Trust, a charitable organisation based in New Zealand.

We set up an interview and I used the opportunity to ask him not only about his current project, but also about his view on the Stroke Action Plan for Europe 2018-2030, ICD-11 and how could these things lead to a real-life impact on stroke prevention, treatment and after-care. (more…)

Catalonia faces Stroke with the European tools

Catalonia faces Stroke with the European tools

Written by Maties Salom, Fundació Ictus Barcelona

Barcelona, 1st June 2018- The Fundació Ictus, a stroke support organisation from Barcelona, organised today a gathering  related to the challenges that stroke presents for all European countries. At this meeting, the Catalan Foundation introduced data on stroke in Catalonia, following the path opened by the Stroke Alliance for Europe with The Burden of Stroke Report, published in 2017. The conference “Catalunya i Europa davant l’ictus” (“Catalonia and Europe in front of the stroke“) was opened by SAFE President, Jon Barrick, and European Stroke Organisation Past President, Valeria Caso. The meeting convened more than 150 people with different professional backgrounds- medics, researchers, stroke survivors and their relatives.

Approximately 13.000 stroke patients get admitted in the Catalan hospitals every year. This condition’s incidence is almost 180 cases for every 100.000 people and mortality is 29,5/100.000. The conference faces issues in domains of research, primary prevention, stroke services organisation, acute stroke management, rehabilitation and life after stroke.

Speakers addressed all of these points in two round tables which helped build a complete overview of the situation with stroke in Europe and outlined a road map for all the countries over the next decade.

The meeting mainly focused on the stroke situation in Catalonia and presented the Catalan point of view of the Stroke Action Plan for Europe 2019-2030, recently presented in the European Parliament by ESO and SAFE. The Member of the European Parliament, Mr Ramon Tremosa, provided the institutional point of view of the discussed issues.

The neurologist from Barcelona, Mr Angel Chamorro, presentated the current state of stroke care in Catalonia, which is very good at the moment, but they are looking at the 2030 targets and striving for excellence.

Need to improve your advocacy skills? No problem- SSOFT Module 2 Launched

Need to improve your advocacy skills? No problem- SSOFT Module 2 Launched

Brussels, 31st May 2018 – The eLearning Module 2 of the Stroke Support Organisation Faculty Tool (SSOFT) is published today at the following address

SSOFT’s second module focuses on the principles around advocacy, and is delivered in ten bite-sized sub-modules:

2.1 – Why does stroke care need to improve?
2.2 – What is advocacy?
2.3 – Unmet needs
2.4 – The value of evidence
2.5 – Decisions
2.6 – The health policy environment
2.7 – Identifying the decision makers
2.8 – Setting clear objectives
2.9 – Developing a strategy
2.10 – Your advocacy work

The module provides learners with a wealth of knowledge and includes videos, interactive content and activities. Learners will be able to work through the sub-modules at their own pace, earn rewards and share their progress on social media. (more…)

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