Points about Heilaheill’s activities

Heilaheill is a voluntary association in Iceland whose purpose is to help people with aphasia brain damage. Members are people with brain damage, aphasia, and their relatives. The  work of the association is done in collaboration with specialists in the area of late brain damage.

Heilaheill has had close cooperation with the public sector, where the aim has been to evaluate the way people are treated when they get brain damage, aphasia. We have focused on initiatives that help to shorten the time from when the injury occurs until the person is in hospital. There has also been a focus on improved treatment. We have recently created an app which helps people both recognize stroke sooner and contact the emergency center. The app can also be used by the emergency center to find the citizen. In recent years, we have been around the country to teach how to use the app. In this connection, we have also taken the opportunity to inform about risk factors for brain damage, such as stress, and encouraged people to contact their doctor if they suspect they could be in a risk group for brain damage.

• In the course of time, we have focused on aphasia, by making information leaflets, organizing group courses with speech therapists, etc. Right now we are working on getting the conversation group up and running in collaboration with speech therapists. Everyone is supposed to take part in the discussion.  The idea is to create a continuum so that the citizen has somewhere to go when treatment at the rehabilitation centers stops. In this way, we try to hold on to those affected so that they do not disappear and be forgotten. In this way, we can also maintain and build on the development that must have taken place during the rehabilitation process.

Then there is a group of people which meets regularly to read and write without specialists so called peer education. The group meets on a regular basis in a coffee house.

All this is done in cooperation with speech therapists.

Heilaheill is also trying to get people’s attention f.ex. by buy coverage in a national newspaper about aphasia and brain damage and we publish also yearly a magazin, Slagorðið is its name. (Literally the strokeword)

Heilaheill has a website, www.heilaheill.is, which is regularly updated with news and information.

Heilaheill is a charity, working on the welfare and interests of those who have had a stroke (stroke), their relatives and those who are interested in the issue,
* to promote increased knowledge of patients, their relatives and the public about stroke and its consequences;
* to improve the conditions of those who have suffered;
* work on counseling and information services for those who have suffered a stroke, patients and their relatives about their way of life, rights and well-being;
* to strengthen cooperation with non-governmental organizations that have the same goals.

Internal operations
1. General meetings
2. Board meetings
3. Association meetings in Reykjavík and Akureyri
4. Summer trips
5. Annually, the association has hosted a well-publicized international Stroke Day (World Stroke Day – 29 October).
6. Forum
7. Publication issues
8. Social media, website, Facebook, Twitter, etc. from 16.12.2005

The association is a member of the national association ÖBÍ, which is a complex of different patient associations with different viewpoints that are marked by different disability and viewpoints regarding it. The work of the association is comprehensive and spans many aspects, and one of the association’s volunteers takes care of the collaboration and keeps a close eye on it. Is the alliance’s financial support to the company very important.

SAFE
The company has been a member of the European Association of Stroke Victims, SAFE, since 2010 and regularly attends its conferences and general meetings. Have news about them posted on the website.

NAR
The association has included aphasia in Nordiske Afasirådet (Stroke Associations in the Nordic Countries) (Nordisk Afasiråd/Nordic Aphasia Organisation) until 2024 and is currently doing some training with a group of speech pathologists on aphasia after a stroke.

SAP-E
SAP-E is a joint project of ESO professionals and patients SAFE in Europe, they made an agreement that is valid in 2030. It stipulates that professionals and patients in Europe will join hands regarding the stroke and it is assumed that each country individually within the organization work towards certain goals regarding the prevention, treatment and rehabilitation of the trauma. Is the chairman of HEILAHEILLA the second spokesperson (coordinator) of Iceland f.h. patients and Björn Logi Þórarinsson, drug and neurologist and Dr. Marianne E. Klinke, director of the academic department in the nursing of neurological and neurological rehabilitation patients f.h. representatives of Iceland.

CEREBRUM
HEILAHEILL has agreed to grant the Czech charity CEREBRUM authorization to include the company’s name in its application process to the Czech authorities for bilateral cooperation between the organizations on aphasia, and they received a positive response about the relationship valid from September 2024 to March 2025.