ASIF is an international membership organisation representing patient associations around the globe specialising in the support of patients with Axial Spondyloarthritis (axSpA)
ASIF is a Charity registered with the Charity Commission for England and Wales Charity # 1173902
ASIF’s Mission is To increase awareness of Axial Spondyloarthritis (axSpA) and knowledge of the disease around the world to all key stakeholders be they people living with axSpA, health care professionals, researchers, pharmaceutical organisations, policy makers or the general public.
Axial Spondyloarthritis (axSpA) is a chronic inflammatory disease that encompasses radiographic (Ankylosing Spondylitis or AS) and non-radiographic (nr-axSpA) forms. It is a rheumatic inflammatory disease primarily affecting the spine and sacroiliac joints Called Morbus Bechterew in some European countries. It can lead to chronic pain, structural damage and disability.
Leading symptom: Inflammatory back pain that improves with exercise but not with rest
Disease onset: Usually before the age of 45, often in the 20’s
Prevalence: Similar to Rheumatoid Arthritis 0.2-1.4% of adults have axSpA
Comorbidities: Patients may also experience uveitis, psoriasis, enthesitis and IBD
axSpA: Affects both men and women equally
axSpA places a huge physical impact and psychological stress on patients which can disrupt every aspect of their life and its quality including mobility, sleep, work and relationships. It is a poorly understood disease that causes patients to worry for their future.
ASIF is a member of the People with Arthritis/Rheumatism in Europe (PARE), a standing committee of the European League Against Rheumatism (EULAR). We also cooperate with the Assessment of SpondyloArthritis international Society (ASAS), the international working group of Axial Spondyloarthritis researchers.
ASIF has 51 Patient Organisation Members from 41 countries around the world.
ASIF is grateful to its industry partners:
Download our latest Newsletter (August 2021)
Aims of Asif
- Exchange of information and experiences among the member societies,
- Cooperation in international research projects,
- Exchange of articles for publication in the journals of the member societies,
- Support of the development of newly formed societies,
- Make contact with axial spondyloarthritis stakeholders in countries where an axSpA society does not yet exist
ASIF ConstitutionThis version of the constitution was accepted by the ASIF Council at its 12th meeting held in Moscow (Russia) on 8th October 2016 and amended at a Annual General Meeting in Madrid (Spain) on 12th June 2019.
Please click on our team members to read more about them.
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.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, CyprusTreasurer THIERRY VANNIER FranceTrustee DR. TUNCAY DURUÖZ TurkeyTrustee RUTA GRIGIENE LithuaniaTrustee RAJ MAHAPATRA United KingdomTrustee CASSIE SHAFER United States of America
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.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.Trustee MARANDA VAN DAM South Africa
MARANDA VAN DAM
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.Scientific advisor DR. UTA KILTZ Germany
DR. UTA KILTZ
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.Scientific Advisor PROF. MARCO GARRIDO CUMBRERA Spain
PROF. MARCO GARRIDO CUMBRERA
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).Executive Support to the Board JO DAVIES United Kingdom
Executive Support to the Board
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.Assistant Administrator VALERIA TASSI United Kingdom (and Italy and Germany)
United Kingdom (and Italy and Germany)
As ASIF’s Assistant Administrator, Valeria helps and supports the fantastic people (her words!) who run and make the Federation truly a worldwide entity. Italian art historian and marketing consultant with an international background, Valeria co-founded a small charity supporting children with neurodevelopmental disorders in London. After a cancer diagnosis, she chose to devote her time to her family. Valeria is training to become a Tai Chi Chuan teacher, keeping herself healthy competing on at a national level, she also studies acupuncture. Knowing that her work with ASIF can help friends and patients diagnosed with axSpA, Valeria sees it as a form of therapy as well as an important vocation.Volunteer - past Trustee and Secretary MICHAEL MALLINSON Canada
Volunteer - past Trustee and Secretary
Michael is a past-Secretary of ASIF and a current volunteer. A retired banker, Michael was diagnosed with axSpA after a ten-year search for a diagnosis. “I didn’t want that to happen to anyone else if I could help it” says Michael, who finds volunteering in the axSpA community a therapy in itself. Michael assisted in forming the Canadian Spondylitis Association in 2006 and was its first President until retiring in 2017.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.Communications Manager JOANNE DE BRY United Kingdom
JOANNE DE BRY
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.Languages: