Focus on Finland: MDS Alliance Members‘ News

Association of Cancer Patients and the MDS Network in Finland

The Association of Cancer Patients in Finland aims to safeguard the best possible support for cancer patients and their families during treatment and rehabilitation, as well as to reduce the adverse effects in society caused by cancer. The Association was founded in 1971, and one of the strengths of the Association is the long experience in patient advocacy and support.

In its operations, the Association observes the principle of patient-centered care with an emphasis on patients’ individual needs and opportunities of influence. This principle guides both the promotion of patients’ interests and the development of our services.

The Association produces reliable information about cancer diseases and their treatment, as well as maintains a comprehensive selection of patient guides.

Helping MDS Patients:  how to support a small population within large geographical distances

For MDS patients the Association has a MDS Patient Network, MDS patient guide as well as a video “I was diagnosed with MDS”. The MDS patient network operates mainly on Facebook and provides an opportunity for discussion and peer support. The Finnish MDS materials and link to the Facebook group can be found on this link:

www.syopapotilaat.fi/potilasverkostot/myelodysplastinen-oireyhtyma-verkosto/

There are approximately 200 newly diagnosed MDS patients in Finland each year. The MDS patient network on Facebook has members from different parts of Finland, and due to small population and geographical distances, there are no regular group meetings. However, the Association organises yearly patient events for haematological cancer patients, including lectures for each patient group and time for peer support. The next haematological patient weekend takes place in September 2018.

Current Projects: Empowering Patient Advocates & Patients Returning to Work

In addition to our core activities (information, support and advocacy) the Association implements two projects during the years 2017-2020. The ‘Empowering patient advocates – information and support from international networks’ project started in spring 2017 and aims at educating patient advocates and networking with European patient organisations.

Advocates will share the information from seminars, congresses and meetings with their peers in Finland. The project had a flying start and is now supporting an active and committed group of advocates.

The ‘Alive and empowered, also at work – Support in return to work’ project started in the summer of 2017. The project aims to facilitate people who have had cancer in returning to work by providing physical, psychological and social support.

We are looking forward to collaborating with the MDS community. Please contact us:

Contact person: Project Manager Mirjami Tran Minh, mirjami.tranminh@syopapotilaat.fi
Website: www.syopapotilaat.fi
Facebook: www.facebook.com/cancerpatientsFinland/
Twitter: @syopapotilaat