Who we are

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  President ZHIVKO YANKOV Bulgaria
  

  President

  ZHIVKO YANKOV

  Bulgaria

  Zhivko Yankov was elected as president for ASIF at the 2016 Council Meeting in Moscow, after spending two years as a trustee. He has been Chairman of the Bulgarian Ankylosing Spondylitis Association since 2009. He was the representative for Bulgaria in PARE, founding member of Bulgarian organisation for patients of rheumatic diseases and AGORA – the international body representing rheumatic organisations in southern Europe. Zhivko has a master’s degree in engineering and computer CAD/CAM design. He is currently studying for a master’s degree in psychology. In his spare time Zhivko likes travelling and hiking. His dream is for scientists to find a cure for axial spondyloarthritis. He is a strong believer that communication is the best cure for everything and everyone.

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  Secretary ANDRI PHOKA Cyprus
  

  Secretary

  ANDRI PHOKA

  Cyprus

  “In 2016 I received a letter from ASIF as patient member representative, this letter asked for people to nominate themselves for a trustee position. I, as a person with Ankylosing Spondylitis and a board member of the Cyprus League Against Rheumatism, saw this as an opportunity to work towards a better future for people with axSpA around the world. When I became an ASIF trustee, I met passionate trustees who wanted to raise awareness globally for axSpA, visionaries for a global organisation who can help big and small organisations to improve the situation in their countries, and even help countries without a patient organisation to start one. Having served ASIF for 5 years now, I believe it was one of the wisest decisions I made to become a trustee.  I have learnt a lot about axSpA, I empower my knowledge and I share it in my national organisation, I share my opinions, my ideas, and my knowledge with others. I see ASIF becoming a bigger and stronger global organisation day by day and I am part of it. In addition, I have learnt about people around the world: scientists, rheumatologists, advocates, patients, people from the industry. I have participated in lots of conferences and I feel like I gain much more than I give. I would truly recommend becoming a Trustee of ASIF.” – Andri Phoka, Cyprus

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  Treasurer Susan Davies UK
  

  Treasurer

  Susan Davies

  UK

  Susan was born and raised in the United Kingdom and qualified as a Chartered Accountant in London, England where she currently resides.

  She is a highly experienced Finance Controller with a background working  within SME’s, startups and global organisations across both mature and emerging markets
  primarily within technology firms supporting organisations achieve their short and long-term financial objectives.

  Her work has allowed her to work in a number of countries outside of the UK and with many teams across multiple geographies. She is looking forward to continue working with the ASIF global community and supporting their ongoing success in growing the organisation.

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  Trustee DR. TUNCAY DURUÖZ Turkey
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  Trustee RAJ MAHAPATRA United Kingdom
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  Trustee CASSIE SHAFER United States of America
  

  Trustee

  CASSIE SHAFER

  United States of America

  Cassie joined Spondylitis Association of America (SAA) as the new CEO in 2017 and became an ASIF Board of Trustee in 2018. She brings more than 35+ years of nonprofit healthcare executive management to her role having prior senior management experience with US nonprofits that include the American Heart Association, American Lung Association, National Kidney Foundation and American Diabetes Foundation. She has a background in Psychology from Sonoma State University. Cassie enjoys learning something new about Spondyloarthritis and it’s impact on patients everyday from members of the spondy community served by SAA. Expanding partnership opportunities with ASIF on various programs and projects allows more awareness and exposure internationally for both organizations, reaching those diagnosed with Spondyloarthritis. One key area Cassie wants to focus on for SAA is more disease awareness to those suffering from undiagnosed chronic back and neck pain and helping patients recognize the need to see a rheumatologist for an accurate diagnosis and treatment plan. The opportunity to meet such passionate patients internationally has been a very positive experience since joining ASIF as a member organization and the Board of Trustees.

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  Trustee LILLANN WERMSKOG Norway
  

  Trustee

  LILLANN WERMSKOG

  Norway

  Lillann was born and raised in Oslo Norway. She earnt several degrees in art history, cultural history and history of ideas from the University of Oslo, and completed research in political science, society, art and architecture.

  Since 2016, Lillann has been involved in Spafo Norge Norway’s projects, interest policy work (working for the members’ best interests with government and policy makers) and daily activities. She has a passion for interest policy work because of the difference it makes to people. Lillann has worked closely with the ASIF team on the International Map of Axial Spondyloarthritis (IMAS) project, which she enjoys as she cares deeply about science, knowledge-based dissemination and working internationally. Lillann has written many articles for Spafo Norge’s member magazine and for rheumatic conferences including EULAR and ACR.

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  Trustee MARANDA VAN DAM South Africa
  

  Trustee

  MARANDA VAN DAM

  South Africa

  Maranda is the current chairperson and has overall responsibility for the management of ASASA.
  She was diagnosed with AxSpa in 2016, after walking the frustrating path of a delay in her diagnosis of almost 8.5 years. At the time of her diagnosis, she tried to reach out to a support group, and then realised there is a huge  void to fill. She has since become an advocate for this disease.
  Not only is she a business owner, but also a single parent to two boys. In her spare time she likes riding adventure bikes. She has recently completed a gruelling trip with her motorbike for 3 weeks in the Himalayas. She enjoys an active lifestyle that includes riding her mountain bike, playing tennis and Pilates.

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  Scientific advisor DR. UTA KILTZ Germany
  

  Scientific advisor

  DR. UTA KILTZ

  Germany

  Uta gained her MD in 1997 from Ruhr University Bochum, Germany. Currently, she works as a rheumatologist in Rheumazentrum Ruhrgebiet, Germany. She treats the wide range of inflammatory rheumatic diseases in a specialised rheumatology outpatient clinic. Uta’s main scientific interest is on the field of spondyloarthritis, focusing especially on patient-reported outcomes and quality standards. She has coordinated the developments and the update of the national guideline for axial spondyloarthritis in Germany for more than 10 years. Since 2008, Uta has been a member of Assessment of Spondyloarthritis International Society (ASAS). She has been scientific advisor to ASIF since 2017.

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  Scientific Advisor PROF. MARCO GARRIDO CUMBRERA Spain
  

  Scientific Advisor

  PROF. MARCO GARRIDO CUMBRERA

  Spain

  Marco is a full professor at the University of Seville and leads the Health & Territory Research group at the University of Seville. He has published more than 30 articles in peer-reviewed journals and more than 100 presentations at international conferences (including EULAR, ACR, BSR among others). He has worked in international organisations such as the World Health Organization (WHO).

  In the field of Axial Spondyloarthritis, Marco is PI of the European and International Map of Axial Spondyloarthritis (IMAS) projects that are being implemented in more than 35 countries in 4 continents (Europe, Asia, North/Central/South America and Africa). Additionally, Marco Garrido leads the REUMAVID project aimed to Assess the Impact of Pandemic COVID-19 on patients with Rheumatic Diseases in six European countries. Marco participated in the ASAS ASAS/OMERACT Core Set Axial Spondyloarthritis and the SKIPPAIN Clinical Trial.

  Marco is committed not only to Spondyloarthritis Research but also to the patient movement, being Scientific Advisor of the ASIF and the Spanish Federation of Spondyloarthritis Associations (CEADE).

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  Executive Director MIKE MANDELBAUM United Kingdom
  

  Executive Director

  MIKE MANDELBAUM

  United Kingdom

  Mike has worked in the NGO sector for over 30 years, focusing on health and international development. He has managed palliative care services in the UK and been Chief Executive of a palliative care education charity working in Eastern Europe and Central Asia. He also spent 13 years as Chief Executive of an NGO tackling tuberculosis in the UK and in high burden countries, primarily India and southern Africa. In common with axSpA, much of his work in tuberculosis focused on tackling diagnostic delay, with partnership work involving patient groups, affected communities, a wide range of community and NGO stakeholders, healthcare professionals and research institutions.
  “I am very excited to be joining the world of rheumatology and axSpA. ASIF has demonstrated the importance of international collaboration and I look forward to building on its successes to improve the lives of people with axSpA and support the work of axSpA organisations across many countries”.
  Mike lives near Brighton on England’s south coast with hills to the north, the sea – and mainland Europe – to the south, and within easy reach of London.

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  Assistant Director JO DAVIES United Kingdom
  

  Assistant Director

  JO DAVIES

  United Kingdom

  In 2017 Jo was appointed as Executive to the Board, ASIF’s first employee. Jo has a background in grant-management and charity governance.  It is such an exciting time to work for ASIF as it grows its global community and is working on some exciting major international projects.  “It is an honour to work in a job where you get to meet so many amazing people all around the world who are doing their best to make life better for people with axSpA”.  Jo was diagnosed with Ankylosing Spondylitis more than 30 years ago after suffering a number of years of pain without diagnosis.  She now lives well with the disease and is an active member of NASS in the UK where she is Chair of NASS Euston a local group of patients in London, who exercise together regularly.

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  Project Manager JO LOWE Portugal
  

  Project Manager

  JO LOWE

  Portugal

  Jo joined ASIF as Project Manager in September 2020. She manages ASIF’s key projects, including the International Map of Axial Spondyloarthritis (IMAS); Delay to Diagnosis and a members’ resources project.

  Jo was born in Manchester, UK – but now lives in Portugal. She has worked in a variety of healthcare research roles at The University of Manchester, including project managing clinical trials and studies involving healthcare workers in the NHS. Jo has worked extensively with patient groups and is passionate about ensuring the patient voice is always heard. She is eager to better understand the experiences of people living with axSpA globally and dedicated to help improve their quality of life.

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  Communications Manager JOANNE DE BRY United Kingdom
  

  Communications Manager

  JOANNE DE BRY

  United Kingdom

  Joanne joined ASIF in 2021 to develop and grow the organisations’ communications. Joanne has 20 years of marketing and communications experience in health-related charities. She has worked with national patient groups both directly and while working for international membership organisations, similar to ASIF. Joanne understands the importance of advocating for patients’ rights to medical care. She is passionate about using communications to improve the lives of patients and ensuring their voices are heard.