Welcome to SerbiaWelcome to Serbia

11stst Agora Conference Agora Conference21-23 September 201221-23 September 2012

On behalf of ORS, On behalf of ORS,

the the city of Belgrade and Serbia, city of Belgrade and Serbia,

I would like to welcome you all to the I would like to welcome you all to the

11stst Agora Conference Agora Conference

Welcome

Facts:

More than a million people in Serbia (or 1 in 7) are affected by rheumatic diseases.

More than 30,000 adults and about 2,000 children are diagnosed with rheumatoid arthritis

Majority of sufferers are diagnosed almost two years after the first symptoms appear

In response to the situation, ORS was founded in 2007 as a non-political, non-

government and not-for-profit association.

ORS stands for:

Association of Rheumatic Diseases Patients of the Republic of Serbia

Establishment of ORS

The formation of ORS was supported by:

Rheumatology Association of Serbia(RAS) Association of Parents of Children Suffering from

Rheumatic Diseases

ORS would like to specifically acknowledge contribution of the following extraordinary individuals:

Prof Dr Nemanja Damjanov President of RAS and General Secretary of EULAR Executive Committee and Managing Director of the Institute for Rheumatology, Faculty of Medicine, University of Belgrade, and

Prof Dr Jelena Vojinovic from the Medical Faculty, University of Nis.

Supporters

ORS is governed by a Board comprising both medical experts and patients suffering from rheumatic diseases.

ORS founder and its current President is Primarius Dr Mirjana Lapcevic.

ORS is funded by members through their membership fees, but is greatly assisted by the generous financial and in kind support of several pharmaceutical companies, the Institute for Rheumatology in Belgrade, EULAR, the Institute Niska banja in Nis, Military Medical Academy in Belgrade and the Special Hospital for Rheumatic Diseases in Novi Sad.

All ORS staff are volunteers.

ORS Board and funding

Map - ORS branches

International engagement

ORS initially took part in the EULAR Congress that was held in Paris in June 2008.

ORS was admitted into EULAR and became a member of its Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) at the Congress in Copenhagen in June 2009.

We have participated in international meetings to enable exchange of information among patients' organisations, as well as to further education based on experience of others.

International engagement

The first time we heard about Agora Alliance was at the EULAR Autumn Conference 2010 in Berlin and we were interested in its establishment. ORS became one of the founders of this very important league for rheumatic patients across Southern Europe.

It is great honour for us to be the host country of the 1st Agora Conference.

Domestic activities

Education of ORS members and active volunteers is being carried out by ORS since its establishment.

Lectures and brochures about the importance of early diagnosis, different ways of treatment, healthy diet, employment and physical activity - are only some of activities offered to the members for their education.

Domestic activities We operate hot-lines once a week in ORS Central office and MMA

Branch in Belgrade, in Novi Sad Branch and recently in Zrenjanin. Our web site www.ors.rs was launched in August 2009. Our

members and other interested people are visiting it to get information about ORS activities, download leaflets and brochures about rheumatic diseases and instructions on healing activities. At

this point in time, our web site is only in Serbian.

Domestic activities Following an example of an Australian organisation and some European associations we started Tai Chi exercises. One bank and some phramaceutical companies supported this project financially and Institute for Rheumatology provided us with a gym for doing the exercises. Thanks to them, these exercises are free for ORS members. We hope to expand this to other cities in Serbia.

Projects

Assessment of Quality of life of Patients Suffering from Chronic Rheumatic diseases- The first project that ORS undertook was researching quality of life of the people with rheumatic diseases, in the first place those with rheumatoid arthritis. The following institutions were included in this project: Serbian Medical Society - General Practitioners Branch, a number of Serbian health centres and three rehabilitation centres.

The research results were compared with a similar USA study. The comparison showed that the quality of life of Serbian patients was worse than the USA ones. On scale of 1 to 100, Serbian patients’ quality of life was worse by about 10 units.

Serbia Against Cancer – 2010. The Serbian Ministry of Health funded the project. People who have been treated with biologics had an opportunity to be tested on breast cancer, colon cancer and uterus cervix cancer. Fortunately, none of the tested people were found to have developed cancer.

In the same year we continued education of ORS active members from all branches by conducting Project Proposal Writing Seminar, aimed to educate branch leaders to apply for projects funding independent from the central office.

Projects

In 2011 we obtained financial support from "EULAR Educational visits Programme" to visit a developed organisation with a long tradition in Europe - Germany.

Visit to Deutsche Rheuma Liga Nordrhein-Westfalen e. V. (DRLNW) provided an opportunity to find out what is the basis of a succesfull organisation.

Our colleagues from DRLNW kindly provided us with their documents that regulate the relationship between the central office and its local branches and we are now working on our own documents based on the German model.

Projects

On suggestion from our German hosts, we considered a project similar to DRLNW’s ‘Patients Partners’.

In August this year we launched a similar project called "Patient as a Partner in Treating Rheumatic Diseases“.

This project comprised of two-day education of ORS volunteers from all our branches, including diseases' symptoms, ways of treatments, diet, physical activities, psychological approach, etc.

All volunteers who participated in this course are obliged to continue this project in their own environments and to educate and give instructions to other ORS members.

Projects

All these projects, meetings and education bring our Association closer to fulfilling our

mission: helping sufferers and the society to understand the illness and to learn how to

live with it.

There is a long way ahead.

We thank all of you who are supporting us on our journey.

Fulfilling our mission

Thank you for your attention and Thank you for your attention and have a great conference!have a great conference!