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On November 8-9, 2014 the 11th Conference of Ankylosing Spondylitis International Federation (ASIF) took place in Sofia, Bulgaria.

The Federation unites patients’ organizations from various world countries. Founded in 1989, it now includes 34 member countries from almost all continents, except for Africa and the Antarctic.

In 2013 the Russian Ankylosing Spondylitis Association filed an application with ASIF in order to become a new member of the Federation. ASIF congratulated us on finally establishing our own patients’ organization for ankylosing spondilitis patients in Russia and invited the representatives of the Association to take part in the 11th Conference of the International Council. Аmong other things, the agenda included the acceptance of our Association as a new member of the Federation.

Bulgarian people met the Russian representatives of ASA with much hospitality. The Bulgarian Patients’ Organization is trying to draw public attention to the problems that patients experience by installing a shoe-lace sculpture in the very heart of Sofia. It demonstrates that it is often difficult for our patients to lace up their shoes.

The Conference was attended by 39 delegates from 19 world countries: Bulgaria, Russia, China, Germany, Austria, Norway, Australia, Canada, the Netherlands, Italy, Lithuania, Portugal, Hungary, Belgium, England, Ireland, Switzerland, Czech Republic and Turkey.

The Conference started with a greeting from Seoirse Smith, President of ASIF, who then gave word to Zivko Jankov, President of the Bulgarian Patients’ Association. The organizers greeted the attendants and thanked the Bulgarian delegation for their prompt, highly professional and thorough organization of the Conference. The Conference was initially supposed to be held in Bologna, Italy, but the Italian side experienced some difficulties, and it was then decided to change the location to Sofia.

After that ASIF executives presented their report on the activities of the Federation during the last 3 years. They told the attendants about the projects that ASIF implemented during this time.

One of these projects is the Asleep website and search facility (asleep.org). This project assists travellers who suffer from ankylosing spondylitis and offers convenient hotel search among those hotels that have a choice of various pillows, mattresses, bed height and other facilities, for instance: easy shower access (no ledge or steps), shower rail and no-slip mat.

During the Conference there were frequent exercise breaks and therapeutic exercise sessions.

New applicants for ASIF membership - delegates from Russia, Lithuania and the Netherlands - presented reports on their activities. All three applicants stressed the importance of promoting the active way of life of their patients and regular therapeutic exercise. The patients’ organization from the Netherlands had even held a volleyball competition among patients with ankylosing spondylitis.

After the voting Russia, Lithuania and the Netherlands were unanimously accepted into the Ankylosing Spondylitis International Federation.

The participants of the Conference had several discussion sessions on further development of ASIF. They discussed the international recognition of ASIF, the need to create regional international federations (for instance, in the countries of the former USSR, in Western and Eastern Europe); the development of ASIF website and how ASIF can help new patients’ organizations in various countries.

The Swiss delegation presented a video promoting a back pain test that can be taken on their official website. The aim of that video ad was to show that back pain should not be ignored; by taking a specialized test one can understand what to do and which doctor to go to.

Professor Peter Taylor from the Department for Musculosceletar Research at the Oxford University gave a very interesting and informing lecture on biosimilars and presented general data on biological drugs. He explained the complicated process of creating a biological drug and predicted a significant breakthrough in medical treatment of ankylosing spondylitis in the next 5 years.

Head of the English delegation Debbie Cook presented a report on using social media as a tool for informing the public about the activities of regional organizations and establishing communication between the patients and the organization. In Britain social networks are an easy way to access politicians and various-level officials who actively communicate online. Debbie Cook stressed how important it is that regular patients communicate with the organization online. This way the government officials can witness the patients’ constructive attitude and see the actual number of patients behind the organization.

At the end of the Conference ASIF executives asked the members to suggest a possible location for the next Conference that will be held in 2016 or 2017. President of the Russian Ankylosing Spondylitis Association Alexey Sitalo suggested Moscow or Saint Petersburg as locations for the next Conference. No other locations were suggested, which makes it quite possible that the 12th ASIF Conference would be hosted by Russia. Hosting the event of such level in Russia will by all means significantly contribute to the promotion of the patients’ organization in our country.

Video of the event can be found on the canal Society on Youtube:

Photos of the event can be viewed on Facebook.

Russian Ankylosing Spondylitis Association expresses special gratitude Zmeeva Julia and Zhivko Yankov for support and assistance during the trip to Bulgaria. You helped us a lot!

Russian Ankylosing Spondylitis Association expresses special thanks to Anna Vladi and Zmeeva Julia, for creating a wonderful video report and the adaptation and translation of the text into English.

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