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
Jul 27, 2016
About SAFE
Stroke is the leading cause of adult disability and one of the biggest killers across Europe. It is predicted that by 2040, there will be 12 million people living with stroke in Europe – an increase of 35% on the current figure of nine million stroke survivors[1].
SAFE’s vision is to greatly reduce the number of strokes in Europe and ensure all those touched by stroke get the support they need.
We engage in activities such as strengthening our SSOs, advocate at the European and national country level, and encouraging research, all of which contribute to the advancement of stroke prevention and the improvement of the quality of life of stroke survivors, their families and carers.
We are a non-profit-making organisation, representing a range of SSOs across Europe. Formed in 2004 in Brussels with a membership of eight European SSOs, we now have 37 members in more than 30 European countries.
What have we achieved?
Advocating for stroke
Our first strategic priority is to raise the profile of stroke and advocate for change at the European and national level. We do this through identifying issues and taking action.
- We published the Burden of Stroke in Europe (2018) and the Economic of Stroke in Europe (2020).
- In 2018, in collaboration with the European Stroke Organisation (ESO), we published the Stroke Action Plan for Europe (SAPE).
- We are co-chairs of the SAPE implementation committee with the ESO. The aim is that each country has a national stroke plan using SAPE as a foundation. There are 103 SAPE national coordinators in 52 countries and 11 countries have signed the Declaration to implement the SAPE. In addition, tools such as the Services Stroke Tracker and the SAPE website have been developed to help the NCs with their role.
- We joined the European Alliance for Cardiovascular Health in 2021 who are campaigning for an EU endorsed cardiovascular plan
- Our contribution to the EU Healthier Together Non-Communicable Diseases Initiative lead to the prominent mention of stroke and the SAPE in 2022.
Strengthening stroke support organisations
Our second strategic aim is to strengthen stroke support organisations (SSOs) throughout Europe. We do this through:
- Holding member’s meetings which provide networking and knowledge sharing opportunities between established and fledging SSOs. These meetings have resulted in many new SSO’s being set up across Europe;
- Providing advocacy tools such as the e-learning tool Stroke Support Organisation Faculty Tool (SSOFT) launched in 2018 – to ensure our members are equipped to be stroke advocates throughout Europe.
Raising awareness of preventing stroke
90% of strokes can be prevented, therefore our third strategic priority is to raise awareness of stroke prevention. In 2018 we launched the Stroke Prevention website, a dedicated stroke prevention website available in six languages, containing easily understandable information and advice on the 10 modifiable risk factors for stroke.
Focusing on life after stroke
Raising awareness of the urgent need to improve life after stroke care and support is our fourth strategic priority.
In 2021, we launched our European Life After Stroke Forum webinar series to raise the profile of life after stroke, to discuss research and best practice, and hear the stroke survivor view. We have held five webinars: Priorities, challenges and ways forward, Intimacy and sex; and Caring for the caregiver, Fatigue after stroke and Physical activity after stroke.
We had a global audience and over 1,100 attended. The series was endorsed by the European Brain Council, European Federation of Neurological Associations, the European Stroke Organisation and the World Stroke Organization. In 2022 the series was accredited by the European Accreditation Council for Continuing Medical Education (EACCME®).
In addition, we provide health information to those affected by stroke. In partnership with the Angels initiative, we produced the ‘Surviving Stroke’ brochures to help stroke survivors understand more about their condition, be more actively involved in their treatment decisions and learn more about the important next steps to recovery. These are available in 15 different languages across Europe.
Supporting stroke research across Europe
Our final strategic priority is to support stroke research throughout Europe. Since 2011, we have been involved in eight large EU trials. These trials have received funding from the EU Seventh Framework Programme and the EU Horizon 2020 research and innovation programme. Our role, along with our members, is to disseminate information and results from these projects.
2023 priorities
Advocating for stroke – we will:
- Increase the profile of stroke at the EU and national level through our work on the SAPE implementation committee, ensuring that the work-plans remain focused on improving patient outcomes and cover the whole care pathway including rehabilitation and life after stroke.
Strengthening stroke support organisations – we will:
- Hold one in-person members meeting.
- Relaunch our advocacy support programme for members.
Preventing stroke – we will:
Focusing on life after stroke – we will:
- Host our 1st in-person Life After Stroke Forum in Barcelonaand plan for 2024.
- Provide health information through the ‘Surviving Stroke’ Angels guides in 13 languages.
- Launch our ‘A life saved is a life worth living report’ in March and use this as our focus for European Stroke Awareness Day.
Supporting stroke research – we will:
- Share exciting new information about our EU research projects during Brain Awareness Week.
- Support the development of new EU research projects.
Why join us?
A key priority for us is the support of our member SSOs, and to ensure their concerns are given a voice in advocacy, in research and awareness programmes, policy, campaigning, and development initiatives.
Our latest member’s survey showed that 80% of respondents were either satisfied or very satisfied with their membership of SAFE, 92% agreed or completely agreed that we are an effective voice for the stroke community in Europe and 84% agreed or completely agreed that we provide networking opportunities for our members.
As our member, you will:
- Access a range of benefits to help support your work and growth.
- Help build a network across Europe and strengthen the collective voice of SSOs.
- Use our logo (after approval) on your materials as appropriate.
- Enhance our ability to drive change on stroke across Europe. Your logo and membership will be recognised on our website and appropriately in our materials.
- Ensure that the voice of stroke survivors and carers is heard in the discussions about policy and stroke resources at both EU and national level.
What are the benefits of joining us?
- Access to information, templates and pre-produced campaign and awareness materials and to European level data such as the Burden of Stroke and the Economic Impact of Stroke.
- Access to advocacy training such as the online learning – the Stroke Support Organisation Faculty Tool (SSOFT) and virtual training meetings.
- Patient information translated into the language of your country.
- Discounted place at European Life After Stroke Forum meetings.
- At least one free place at members meetings.
- Opportunities to present at members meetings.
- Networking with your peers through member meetings and subgroups.
- Invitation to SAFE General Assembly meetings.
- Board and officer election voting rights.
- Eligible to stand for board and officer election.
- Access to SAFE member-only online area on the SAFE website.
- Listing in the SAFE online membership directory.
- Right to use ‘member of SAFE’ logo on corporate materials (upon approval).
- Opportunity to submit conferences and educational activities for SAFE endorsement.
- Letters of support from SAFE for national advocacy on key stroke issues
- Regular members’ only newsletters.
- Showcase your work on a European level on our communication platforms such as our website, social media, networks and newsletter.
Who can join?
Our membership creates a community with like-minded organisations. Membership is open to civil society organisations from Europe engaged in supporting stroke survivors. Membership is available via three categories ordinary members, associate members and honorary members.
Ordinary membership confers voting rights and full ability to engage in all initiatives and consultations, and to access SAFE streams of funding if appropriate, and support to templates, press releases, the SSOFT training modules and all other material produced to support members to pursue their goals as SSOs.
Membership of SAFE will confer recognition of the organisation as a supporter of SAFE and the support of the voice of stroke survivors and carers in the stroke world, European (as defined by the World Health Organization) national organisations constituted according to the laws and customs of their country of origin, which represent the voice of stroke survivors and their families, support those at risk of and affected by stroke, and operate with a priority concern for life after stroke.
They will be non-profit, non-governmental organisations. The organisation will be able to demonstrate their involvement with stroke survivors and their families in the community, and that the aims of your organisation are guided by stroke survivor and family priorities.
Associate membership is available to organisations, constituted according to the laws and customs of their country of origin, which support those at risk of and affected by stroke, and who do not fulfil the criteria for ordinary membership.
They may be organisations or societies concerned with representing or driving forward the interests of medical professionals or researchers, or health professionals working in stroke related nursing, therapy, research and development. These will often be commercial organisations concerned with the development of treatments, aids, drugs, services, or research.
Associate membership does not confer voting rights and full access to all the benefits of ordinary membership, but may confer access to many benefits such as SSOFT training modules, information and campaign resources, invitations to events and participation in appropriate consultation initiatives, and gatherings. It also confers recognition of the organisation as a supporter of SAFE and the support of the voice of stroke survivors and carers in the stroke world.
Honorary members are individuals or organisations, constituted according to the law and customs of their country of origin, which have provided outstanding support to SAFE in furtherance of its objectives. It does not confer automatic voting rights or automatic usage of logo.
What are the subscription fees?
| Annual turnover |
|
|
|
Fee 2023 |
| < €200,000 |
|
|
= |
€ 541.01 |
| € 200,000 |
to |
€ 500,000 |
= |
€ 811.51 |
| € 500,000 |
to |
€ 1,000,000 |
= |
€ 1,103.23 |
| € 1,000,000 |
to |
€ 2,000,000 |
= |
€ 2,206.46 |
| € 2,000,000 |
to |
€ 3,000,000 |
= |
€ 3,395.07 |
| € 3,000,000 |
to |
€ 4,000,000 |
= |
€ 4,415.07 |
| € 4,000,000 |
to |
€ 5,000,000 |
= |
€ 5,620.20 |
| € 5,000,000 |
to |
€ 6,000,000 |
= |
€ 6,621.43 |
| € 6,000,000 |
to |
€ 7,000,000 |
= |
€ 7,725.79 |
| € 7,000,000 |
to |
€ 8,000,000 |
= |
€ 8,829.12 |
| € 8,000,000 |
to |
€ 9,000,000 |
= |
€ 9,933.27 |
| > €9,000,000 |
|
|
= |
€ 11,036.40 |
Associates – only pay the minimum fee
[1] A What Cost, the Economic Impact of Stroke in Europe, 2020, www.safestroke.eu/economic-impact-of-stroke/
Join us
To become a member of SAFE, please complete this application form: membership application form
For more information, please contact info@safestroke.eu
Members only resources
Some content throughout the various sections of this website is reserved for SAFE members only.
Here are a few examples of the areas exclusively for members:
- Discussion forum
- Reports from Board meetings
- General Assembly documentation
When you attempt to access a file in the SAFE “members-only” area, you will be prompted to log-in or register when you visit for the first time.
Dec 18, 2020
At the SAFE General Assembly last month (November 2020), SAFE members appointed Hariklia Proios as the new President.
Hariklia is has been on the SAFE board for three years and is the Vice President of the Hellenic Action for Stroke in Greece.
We asked Hariklia about her new role and what her ambitions for SAFE are.
Watch the video
Why did you want to be SAFE’s next President?
I truly believe in SAFE’s mission and goals and I am proud to be involved in such an important organisation operating at a global, European level. Having a background in organising Stroke Support Organisations for more than 20 years and having worked on stroke-related rehab both in terms of academic research and also in clinical setups, in the United States, Switzerland and now Greece, I believe I have the professional expertise and personal experience to help lead our joint efforts.
Why do you feel that SAFE’s role is important?
SAFE has been involved in educating, campaigning and encouraging research and support organisations but always from the stroke survivors’ perspective, always engaging all stakeholders, including healthcare professionals and guiding policy- making not only at a European but also at a global level. SAFE helps stroke survivors engage their human stories, lives are disclosed to us and this is one of the privileges of being involved in SAFE. I believe that if we pay attention to each story detail, we learn something in the process about how life exists “before and after stroke” and is full of adaptation and change. Stroke is a life-altering experience and so therefore SAFE’s role of improving care for stroke is of utmost importance. I would like to continue to advocate on behalf of SAFE and behalf of stroke survivors as I strongly believe stroke survivors should have a voice throughout the healthcare pathway.
Do you see SAFE changing direction in the coming years?
SAFE members have different entry points, and this organisation is here to share information on policy work, lobbying and maintaining a patient voice through case study examples which are also included, for example, in the SSOFT online faculty tool. It is clear the future will involve increasingly more virtual meetings even though these meetings were guided by the erratic vicissitudes of today’s pandemic. So, communication modes have changed but SAFE has always continued and will continue its mission and goals. In the future, even when we will return to face-to-face General Assembly meetings, Working Conferences and Country Cluster meetings in member countries, providing information about the expectations of support organisations, best practice and care, we will most likely maintain a significant virtual element of support, thus reaching out to stroke survivors and other stakeholders who cannot physically attend.
What will be your top priority as SAFE’s President?
SAFE has initiated and is leading a number of important projects, the continuation and successful completion of which will be of top priority in the next couple of years. These projects include the Stroke Action Plan (2018-2030), which influences national care in all member countries, iwill guide policy-making at a global level and the Life After Stroke forum (taking place in March 2021) which is capitalising on the knowledge of all engaged stakeholders, healthcare professionals, stroke support organisations, research/academic experts, and energised leaders. These projects are just a few among others which will be a key ingredient for SAFE’s success. SAFE will continue to encourage member countries to promote the Economic Burden of Stroke and will in the future deal methodically with complex stroke issues including regional inequalities (eg. gender and environmental), diversity and gaps, converging in parallel with a clear-cut setting of goal priorities.
What excites you most about your new role as President?
Understanding and supporting each member organisation, empathetically and always with positive regard and through dialogue, will help us find common solutions and get all those affected by stroke the access to the help and support they need. Teamwork transforms visions to sustainable solutions. My dedication is and will remain to strategically develop a sustainable SAFE as well as continue to honour its cultural legacy for wanting to make a difference in people’s lives.
What is your ambition for SAFE?
We realise that we have a big role in instituting knowledge and education by raising expectations of what quality of stroke care should be like, by strengthening stroke survivor organisations. Stroke prevention is feasible, acceptable, and cost effective: monitoring an irregular heartbeat (AF) or early treatments such as getting to the emergency room in due time. We must stay mindful of best practices and making a difference for those lives who cannot help themselves. My ambition is to look for and try to embrace all our members’ interests and together we will continue to increase public awareness about stroke as a strategic priority.
Watch the video
