EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

Knowledge Transfer Programme

Report

Applying organisation: ESTONIAN RHEUMATISM ASSOCIATION (henceforth as ERA)

Country: ESTONIA

Secretariat address: TOOMPUIESTEE 10, TALLINN 10137, ESTONIA

Telephone: + 372 5343 5501 E-mail: reuma@reumaliit.ee

Contact person and position held within the organisation:

Marek Jaakson, General Manager Telephone: +372 584 555 52 E-mail: marek@reumaliit.ee

Name and address of partner organisation:

SWEDISH RHEUMATISM ASSOCIATION Box 128 51

112 98 Stockholm, Sweden

Magdalena Olsson, General Secretary

Magdalena.olsson@reumatikerforbundet.org, +46850580522.

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

Dates and duration: October, 06.-08, 2012 (3 days)

Summary of educational visit

Knowledge Transfer Programme is an annual programme developed by EULAR Standing Committee of PARE which provides a defined grant to the educational visit programme. The programme is designed for patient organisations who wish to develop their skills and improve their knowledge by learning from the expereriences of other organisations in the EULAR network.

In the picture: Start from Tallinn to Stockholm

The first day, October 06, 2012 was focused on the organizational structure and public relations of the Swedish Rheumatism Association in terms of membership, administrative hierarcy, and the board, etc. We had a two lectures „Work as Physiotherapist and Research?“ and „Reasearch Object and Partner?“ by

Christina Opava - Physiotherapist and RA -patient.

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

In the picture: introduction of our group and welcome from Sweden We learned how Swedish Rheumatism Association works as a roof-organization. How they work with their member-(local)-organizations and- memberships. Also we were intriduced the functions of the board,

secretariat and general management. Magdalena Olsson and Anne Carlsson gave an overview of their daily works.

Christina Opava told about her life and how/why she´s working as a reasearch object and reasearch partner.

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

The second day, Ocrober 7, 2012 we visited the office of regional politican Dag Larsson from Stockholm

County Council who explained how Health Policy works in Sweden. Kristina Söderlund the leader of political campaings of Swedish Rheumatism Association, gave an overview of umbrella organizationś cooperation with politicans in a local and regional level in Sweden.

In the picture from the left: Dag Larsson, Anne Carlsson, Marek Jaakson and Magdalena Olsson with daughter in Stockholm City Council.

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

The third day, October 8, 2012 we visited Karolinska University Hospital´s Rheumatology Department. The department has inpatient, day care and specialized wards in Huddinge and Solna- in addition to primary care consultation services. It also operates as an office at Soder Hospital. Each year they handle around 70,000 patient visits to their specialized ward, 950 on a day care basis and 1,250 inpatient treatments.

The department is also engaged in research, training and specialized training. Rheumatologist Bo Ringertz showed us how the Department of Rheumatology works and what kind of e-health system they use in their daily work.

In the picture: Lecture in Karolinska University Hospital Rheumatologist Bo Ringertz tells/shows how does the hospital´s e-health system work.

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

In the picture: patient questionnaire

In the picture: Rheumatologist Bo Rodgertz shows how patient should fill the questionnaire before the visit to the doctor.

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

After visiting of Karolinska University Hospital we had a meeting with office stuff and leaders of the Swedish Rheumatism Association.

Magdalena Olsson did a little tour around their office and we had possibility to talk with their office stuff.

After the tour Marek Jaakson- the Genral Manager of the Estonian Rheumatism Association gave an overview how the Estonian Rheumatism Association works and answered many questions from stuff of the Swedish Rheumatism Association.

In the picture: Marek Jaakson´s introduction abour the Estonian Rheumatism Association. Before the end of the educational visit, workers of Swedish Rheumatism Association gave an overview how

they work in different areas like with the Member Organizations (Caroline Akerhiem), International

Relations (Rolf Greiff), Press Relations and Social Media (Eva-Maria Dufa), Fundrising (Kicki Aldrin) and

Research (Janne Bagge).

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

In the picture: into the bus!

In the picture: Rolf Greiff giving an overview what is program „SHIA“

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

In the picture from the left: Apothecary Anu Teske from Kohila Organization and Rheuma-nurse Kersti Ossaar are taking a look how Rheumatologist Bo Rodgertz is filling the questionnaire.

In the picture: Entrance to the Clinic of Rheumatology in Karolinska University Hospital

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

Short description of our program in detail (Please find the time schedule attached to this report): Estonian and Swedish organisations have worked together for many years in Baltic and Nordic Rheuma Council. The Swedish Rheumatism Association was established in 1945 and has over 50 000 members in over 200 local organisations. Estonian Rheumatism Association is like a young sister – established in 1991. We have 819 members in 12 member-organisations. The educational visit gave the Estonian Rheumatism Association our member organisations and partners a great overview of good practice in Sweden and also about the importance for patient organisations to cooperate with external stake holders and professionals from the health sector. The educational visit was focused on :

- organisation structure, members and membership fee, funding – comparison between the two countries;

- how to develop fundraising capacities, good example of Swedish Rheumatism Fund;

- political campaigning;

- early diagnosis and treatment, labour market policy programme, and the role of social media;

- collaboration with politicians (good example - Parliament support group in Sweden) Educating leaders of the Estonian Rheumatism Association and other stakeholders, showing them that patient organisations have a crucial role in civil society and that cooperation is a key to success.

Project Aim: e.g. better fundraising abilities-, learn the administrative processes how to run a

professional organisation

This educational visit helped the Estonian Rheumatism Association and our member- organisatsions to understand better how we should organize our work in the future, how we could strengthen our organisation and develop a better fundrising. We also got useful tips on how to work successfully in the political area and also ideas about how to better cooperate with stakeholders in Estonia and in Sweden.

Project Objectives (Expected outcomes, learning outcomes or other) After the Educational Visit programme Estonian Rheumatism Association and our member-organisations hope to get new members through better cooperation with rheumatologists health professionals and through our social media network. We also hope to raise awareness about RMD by inviting the ministry, the health insurance fund and the parliament representatives and MEP to take part in our future projects. Our amition is also to motivate people to work for our organisation and develop a closer cooperation between the Estonian and Swedish organisations. Finally we will work hard to strengthen our organisation by better sharing information between members, partners and stuff.

Evaluation criteria of objectives The Estonian Rheumatism Association will measure the success of the educational visit by:

- 5% increase of members in one year time;

- 5% of income from fundraising by the end of the project;

- having 2 roundtables/meetings with other stakeholders by the end of the project and 4 times a year in one year time;

- 3 articles in media (also local newspaper) about our organisation, RMD

- Arranging a second visit in 2013 for the Swedish organisation to come to Estonia and prepare a long term partnership plan

List of personnel from our organization who participated in the project Suff: Marek Jaakson – translator, General Manager of ERA and Member of the Board of Rheumatism Youth Association; Ülle Kullamaa – Chairman of the Board of ERA Enid Udras - translator, Media Coordinator of ERA Annika Kask - Office manager/accountant of ERA Magdalena Olsson – General Secretary, The Swedish Rheumatism Association Anne Carlsson – the President, The Swedish Rheumatism Association

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

Participants: Mare Käpp - translator, Chairman of the Board of Rapla Chamber of Disabled People Valve Kasemets - Member of the Board of Kohila Association and audit of ERA; Hele Lemetti - Member of the Board of ERA and Tartu Association; Kersti Ossaar - Member of the Board of Pärnu Association and nurse of rheumatism; Elle Pohlak - Member of the Board of Võru Association; Hiie Silm- Member of the Board of Viljandi Association; Maimo Teesalu - Member of the Board of Osteoporosis Association; Anu Teske - Member of the Board of Kohila Association and pharmaceut; Ene Umbra - Member of the Board of Põlva Association; Galina Kreintzberg - Member of the Board of ERA and Rheumatism Youth Association.

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

Budget in Euro

Budget Cost

Total: Travel: estimated cost of airfare, transfer, insurance 3 200,00 3 8 15,13

10/09/2012 Anu Teske report of the cost 2012130 57,06

21/09/2012 AS Wris invoice 223283-01 3214,12

08/10/2012 Marek Jaakson report of the card payment MJ201223 142,97

09/10/2012 Marek Jaakson report of the card payment MJ201224 142,28

10/10/2012 Hele Lemetti report of the cost 2012114 29,04

11/10/2012 Galina Kreintzberg report of the cost 2012124 27,50

12/10/2012 Ene Umbra report of the cost 2012112 20,10

12/10/2012 Ülle Kullamaa report of the cost 2012113 30,60

17/10/2012 Kersti Ossaar report of the cost 2012115 16,00

19/10/2012 Mare Käpp report of the cost 2012119 9,62

22/10/2012 Hiie Silm report of the cost 2012121 17,67

22/10/2012 Elle Pohlak report of the cost 2012120 23,30

31/10/2012 OÜ E.T.X. invoice 1656 84,87

Total: Accommodation: estimated cost of hotel 900,00 833,00

21/09/2012 AS Wris invoice 223283-01 896,00

06/10/2012 Meriton Hotels AS invoice CS130837 75,00

06/10/2012 Meriton Hotels AS invoice CS130838 75,00

06/10/2012 Meriton Hotels AS invoice CS130839 75,00

09/10/2012 Maranello Vara OÜ invoice OT21923 160,00

22/11/2012 As Wris credit invoice -448,00

Total: Out-of-pocket expenses: including meals etc. 2 100,00 847,00

Swedish Rheumatism Association invoice 847,00

Total: Other: photocopying, phone, materials, etc. 100,00 549,95

05/10/2012 AS Wris invoice 226298-01 91,00

05/10/2012 report of the business trip 2012-05/TK 201,33

07/10/2012 Enid Udras report of the cost 2012122 11,62

22/10/2012 Marek Jaakson report of the card payment MJ201225 12,00

01/11/2012 Kirjastus Valgus OÜ invoice 120487 234,00

Total: Project management, accounting, media, translation 700,00 1 454,92

01/10/2012 Enid Udras contract TVL2012-46/pl024 387,07

31/10/2012 RaiMar Konsultatsioonid OÜ invoice 101 1 067,85

Total: Allowance to teaching organisation* 500,00 0,00

Total direct costs: 7 500,00 7 500,00

EULAR Secretariat: Florian Klett, EULAR European League Against Rheumatism, Seestrasse 240, 8802 Kilchberg, Switzerland Tel: + 41 44 716 30 35 Fax: + 41 44 716 30 39

I confirm that the information I have given is accurate to the best of my knowledge and accept the terms under which the grant is awarded.

Place, date: Signed applying organisation:

Tallinn, 30.11.2012 Ülle Kullmaa