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How to start an SSO

Stroke Support Organisations

Stroke Support Organisations (SSOs) come in a variety of flavors. Some are run solely by stroke survivors, some by healthcare professionals and others by a mixture of people with a professional or personal interest in stroke. At a minimum, most SSOs offer information and advice to stroke patients, but they might also provide peer support, family counselling, rehabilitation therapy or welfare services. Many also engage in wider ranging activities such as awareness campaigning, prevention screening, lobbying for better services, and funding or facilitating stroke research. But despite all this heterogeneity, SSO are united by one common goal: to reduce the negative impact of stroke on individuals, their families and the wider society. When starting an SSO, you have to con­sid­er the peo­ple, resources and skills required to setting up and growing and SSO with­in your own coun­try and con­text. SAFE would like to recommend to your attention the Stroke Support Organisation Faculty Tool, an eLearning tool made of six modules that can help you with your stroke support organisation, while they also strengthen your abilities as a stroke advocate. Please visit www.ssoft.info for more information.

Every country needs Stroke Support Organisations: “The Voice of the Stroke Survivor”

Stroke Support Organisations are Non Governmental Organisations (civil society) that address the concerns of stroke survivors and their caregivers by:

Representing their views, and their families’ views on improved stroke care

Organizing services and support in the community using trained volunteers with links to professionals

Raising awareness about stroke and the need for better resources

Sharing experiences in dealing with problems resulting from stroke

Providing relevant information to stroke survivors and their caregivers

Supporting Government initiatives to help prevent stroke in the first place.

Many Governments listen to SSOs because they are the voice of the stroke patient.

Toolkit for growing your Stroke Support Organisation

To help support development of new Stroke Support Organisations, the WSO together with GE Healthcare has funded the development of a ‘toolkit’ which offers advice and help to those wishing to set up an SSO in countries where none exist. It also gives guidance on growing your SSO in different countries and contexts, with examples of how real SSOs across the world have achieved success and growth. The toolkit has been translated into total 9 languages.

Please click here to access the WSO SSO Toolkit.
Please email the International Development Officer sarah.belson@stroke.org.uk for further information and practical guidance on setting up and growing a Stroke Support Organisation.

Sources for this text:

World Stroke Organisation

SSOFT