About SAFE

 

Stroke is a 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.

 

Our 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 stroke support organisations (SSOs), advocate at European and national country level, and encourage 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 European and national level. We do this through identifying issues and taking action:

• We published the Burden of Stroke in Europe (2018), the Economic of Stroke in Europe (2020) and the Life Saved is a Life Worth Living report (2023).
• 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 117 SAPE national coordinators (NCs) in 51 countries and 13 countries have signed the Declaration to implement the SAPE. In addition, tools such as the Services Stroke Tracker, the Essentials of Stroke Care guideline and the SAPE website have been developed to help the NCs with their role.
• Our contribution to the EU Healthier Together Non-Communicable Diseases Initiative led to the prominent mention of stroke and the SAPE in 2022
• We joined the European Alliance for Cardiovascular Health in 2021 who are campaigning for an EU endorsed cardiovascular plan. Seven of our members took part in an EU parliamentary event in Strasbourg in 2023 individually meeting 35 MEPs.

 

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. Our membership has grown from eight to 37 organisations

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, 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 (ELASF) webinar series to raise the profile of life after stroke, to discuss research and best practice, and hear the stroke survivor view. In 2023 and 2024 we held our first and second in-person meetings in Barcelona and Dublin respectively. The topics we have covered include Fatigue after stroke, Physical activity after stroke and exploring mental health post-stroke. All information can be found on the ELASF website.

 

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. In 2023, these were published in 12 different languages across Europe (Bulgarian, Catalan, Croatian, Czech, Cypriot, Georgian, Greek, Macedonian, Polish, Romanian, Serbian and Turkish).

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.

 

2024 priorities

Advocating for stroke – we will: 

• Develop contacts with the MEPs we met in Strasbourg and potential new MEP candidates, using our newly developed manifesto, ensuring that stroke is a priority health condition in the build-up to the MEP elections.
• Continue our work with the Stroke Action Plan for Europe implementation committee, ensuring that our plans remain focused on improving patient outcomes and cover the whole care pathway including rehabilitation and life after stroke
• Support the review of the Stroke Action Plan for Europe update – including publishing a new advocacy version in several languages, with a launch of this new document around World Stroke Day and at an event at the EU in Brussels.

 

Strengthening stroke support organisations – we will: 

• Launch our newly drafted advocacy toolkit.
• Host a series of webinars to provide discussion opportunities with our members and SAPE coordinators to help develop their advocacy work.
• Provide support for SSOs and SAPE national coordinators interested in progressing their advocacy work nationally.

 

Preventing stroke – we will: 

• Review and update strokeprevention.infoto include both primary and secondary stroke prevention information
• Align key information with the new Stroke Action Plan for Europe, publish supporting policy statements, promote prevention best practice, work in alliances to promote prevention initiatives and raise awareness off prevention through the year

 

Focusing on life after stroke – we will: 

• Host our third in-person European Life After Stroke Forum in March 2025
• Provide health information through the ‘Surviving Stroke’ Angels guides in different European languages

 

Supporting stroke research – we will: 

• Share the facts, figures and exciting information about our EU partner research projects in March during Brain Awareness Week
• Support the development of new EU research projects

 

Sustainable and effective organisation – we will: 

• Build our network of funders through developing relationships with stroke support organisations and industry partners
• Host a virtual General Assembly in June

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.

 

As our member, you will:

• Access a range of benefits to help support your work and growth (see below).
• 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 being a member?

• Access to information, templates and pre-produced campaign and awareness materials as well as European level data such as the Burden of Stroke and the Economic Impact of Stroke.
• 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 2024
< €200,000			=	€ 557.24
€ 200,000	to	€ 500,000	=	€ 835.86
€ 500,000	to	€ 1,000,000	=	€ 1,1136.33
€ 1,000,000	to	€ 2,000,000	=	€ 2,2072.65
€ 2,000,000	to	€ 3,000,000	=	€ 3,496.92
€ 3,000,000	to	€ 4,000,000	=	€ 4,547.52
€ 4,000,000	to	€ 5,000,000	=	€ 5,788.81
€ 5,000,000	to	€ 6,000,000	=	€ 6,820.07
€ 6,000,000	to	€ 7,000,000	=	€ 7,957.56
€ 7,000,000	to	€ 8,000,000	=	€ 9,093.99
€ 8,000,000	to	€ 9,000,000	=	€ 10,231.27
> €9,000,000			=	€ 11,367.49

 

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.