About ASIF
ASIF is an international membership organisation representing 56 patient organisations from 45 countries around the globe that support people living with axial spondyloarthritis (axSpA).
ASIF is registered with the Charity Commission for England and Wales.
ASIF’s Vision
A world where everyone affected by axSpA (and related conditions) lives their best life
ASIF’s Mission
To advocate globally to improve the lives of people affected by axial Spondyloarthritis and related conditions. To grow, strengthen and empower our community, and to raise awareness around the world
Our Aim
Everything we do supports our ultimate aim of improving the lives of people living with axSpA
- Raise awareness of axSpA and its impact
- Support our members’ work with campaigns, materials and disseminating information
- Facilitate the exchange of information and experiences within the global axSpA community
- Support the development of existing patient organisations and the establishment of new associations
- Contribute to research
Who we are
-
Chair ZHIVKO YANKOV Bulgaria
Chair
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, as well as 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.
Vice Chair LILLANN WERMSKOG NorwayVice Chair
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.Secretary ANDRI PHOKA CyprusSecretary
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
Trustee DR. TUNCAY DURUÖZ TurkeyTrustee CASSIE SHAFER United States of AmericaTrustee
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.
Scientific advisor DR. UTA KILTZ GermanyScientific 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.
Scientific Advisor PROF. MARCO GARRIDO CUMBRERA SpainScientific 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).
Assistant Director JO DAVIES United KingdomAssistant 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.
Project Manager JO LOWE PortugalProject 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 KingdomCommunications Manager
JOANNE DE BRY
United Kingdom
Joanne joined ASIF in 2021 to develop and grow the organisation’s communications. Joanne has 25 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.
ASIF Council Meeting
Our members and key supporters are invited to our Council Meetings. The Council Meeting is an opportunity for our members to network, share ideas, build new relationships and create opportunities for collaboration, as well as hear about ASIF’s work, participate in workshops and watch presentations from experts in the field of axSpA.
Patient Organisations
ASIF supports our members with the development of resources and creation of programmes that can be localised and used in advocacy, education and awareness raising. We facilitate the sharing of information through our webinar series.
ASIF provides support to people wanting to start patient organisations and offers guidance and advice to fledgling groups. There are still many countries without patient organisations – and we are committed to assisting new organisations grow.
We have developed positive partnerships with pharmaceutical companies working in axSpA and facilitate connections between national affiliate offices and our member organisations.ASIF Constitution
ASIF is governed by its Constitution, which was adopted on 2 October 2023.
Affiliations
ASIF is a member of the People with Arthritis/Rheumatism in Europe (PARE), a standing committee of the European League Against Rheumatism (EULAR).
Our Supporters
ASIF is grateful to our pharmaceutical industry partners for supporting our work.
LANGUAGESSkip to content