ASIF News Archives

Webinar: HCP Education

Monday 19 May at 14:00-15:00 BST

The global delay to diagnosis in axSpA is unacceptable.

One of the major barriers to getting a diagnosis is the lack of awareness and knowledge among primary care physicians and other healthcare professionals (HCPs).

So how do we change this?

It’s not easy! We know that it can be challenging to connect with non-specialist HCPs to raise awareness of axSpA.

In this webinar, we will hear about some of the ways that three ASIF members have tackled this issue. We know that healthcare systems differ between countries and so will explore activities that might work in different parts of the world and how ASIF might be able to support our members in this work.

The presentations will be followed by a panel discussion, and Q&A.

Presenters:

Dr Dale Webb, CEO, National Axial Spondyloarthritis Society (NASS)

Dr Dale Webb is CEO of NASS. With an MSc and PhD in health policy, he first worked in public health in the National Health Service and then as a health services researcher, undertaking numerous national evaluations of health policy interventions. Dale has worked in senior leadership charity roles for more 20 years. At NASS he has led the creation of a Parliamentary Group on axial SpA, the development of a quality improvement programme that has supported 23 rheumatology departments, and a campaign to achieve early diagnosis of axSpA.

Brenda Delodder, Executive Director of Canadian Spondyloarthritis Association (CSA)

Brenda is the Executive Director of the Canadian Spondyloarthritis Association. Before joining CSA, Brenda served as CEO for several organizations including a regional food bank / food recovery charity, where she helped the organization distribute millions of pounds of fresh food to over 100 food banks and earned recognition among Canada’s top 10 charities nationally for social return on impact, and as CEO of the Canadian Orthopaedic Foundation, advancing research. With a strong track record in national policy advocacy and programming, she has contributed to major initiatives including the extension of the Compassionate Care Leave benefit program, shaping osteoarthritis care models and launching hospital screening programs for intimate partner violence.

Previously, Brenda was recognised as one of Canada’s top 10 women leaders for her leadership in COVID-19 emergency response and has held executive marketing and communications roles in the financial services sector.

Maranda van Dam, Chair and Founder of Axial Spondyloarthritis Association South Africa (ASASA)

Maranda van Dam has been a patient advocate since 2018 when she was diagnosed with Ankylosing Spondylitis. Her son was diagnosed with JIA at the age of 15. Maranda is currently a scholar of EULAR as a Patient Research Partner. She is also a member of the iPARE committee. Maranda is a winner of the PARE Best Practice Fair 2022, SARAA Academic Excellence and Recognition Award and Finalist in the APPIS Innovator Awards for Middle East, Asia and Africa 2024. She is also a speaker at various conferences and events. “Giving a voice to a silent disease, has changed my life forever.”

Chair: Nadia Malliou MSc, ASIF Trustee

Nadia is a licensed cognitive and experimental psychologist experienced in various professional settings both in mental health services, primary care services and administration. She’s an axSpA patient herself and focuses on RMDs and chronic pain working as a volunteer with EULAR PARE, the Pain Alliance Europe-PAE, the European Pain Federation EFIC, ASIF, the Hellenic League Against Rheumatism ELEANA and the Federation for Rare Diseases. Nadia recently started her PhD. Meanwhile, she’s a volunteer supporting patients in the Pain Unit of Thessaloniki General Hospital AHEPA. She has participated in several research projects either as a researcher or a patient research partner and has been an invited speaker in numerous conferences.

Use the Contact Form or email communicationsmanager@asif.info to register.

ASAS Annual Meeting

Pictured: Jo Davies, Victoria Navarro Compán, Xenodib Baraliakos and Jo Lowe at ASAS Meeting

Jo Davies and Jo Lowe were delighted to attend the ASAS annual meeting in January. This year’s event marked 30 years of ASAS and was held in Maastricht, in the Netherlands where the organisation was founded in 1995. It was a fitting way to commemorate the success and achievements of ASAS over the last three decades.

During the meeting, Désirée van der Heijde gave a keynote speech describing how and why ASAS was founded and reflected on the main contributions to the spondyloarthritis field over the years. During the gala dinner, a birthday cake was presented and awards given to the members of the first Executive Committee. The ASAS founders, Sjef van der Linden, Désirée van der Heijde, Maxime Dougados, Asim Khan, Andrei Calin and Nick Bellamy were celebrated for their achievements.

In recent years, the collaboration between ASAS and ASIF has developed significantly and ASIF now has a place on the working groups of two key ASAS projects. Discussing these projects in person and hearing them presented to the wider ASAS membership was a fantastic opportunity. It helps us to understand the engagement and enthusiasm of ASAS members’ contributions and puts into context the rigour with which the organisation’s guidelines and endorsements are developed.

There were also some changes in personnel with Raj Sengupta from The Royal National Hospital for Rheumatic Diseases in Bath (UK) being elected to the Executive Committee; two new leaders of Young ASAS (Clementina Lopez Medina and Murat Torgutalp) and a handover in ASAS leadership from Xenofon Baraliakos to Victoria Navarro Compán.

During the final session of the meeting, this handover was an opportunity for Xenofon to thank the members of ASAS and reflect on his five years leading the organisation. Victoria discussed the future of ASAS and what the next five years under her leadership might look like; she also had some wonderful words of admiration for Xenofon and used the occasion to present him with gifts to celebrate his tenure.

ASIF Council Meeting Report

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.

Delegates at the ASIF Council Meeting 2024

The ASIF Council Meeting in Bogota at the end of last year was a great success with nearly 50 representatives from 25 countries across all continents. Our members shared ideas and experiences, whilst experts spoke about the latest developments in axSpA research, the role patient organisations can play in psychosocial health and many other topics.

New Expert Advisory Committee

ASIF has recently established a multi-disciplinary Expert Advisory Committee (EAC), which provides a healthcare perspective on ASIF’s work.

Alongside patient organisations, the committee includes rheumatology; physiotherapy and rehabilitation; nursing; psychology; and epidemiology experts. The EAC is geographically diverse with members from five continents. The steer of the committee ensures that ASIF’s work is impactful, relevant and credible; and that we are able to explore new opportunities from a range of different healthcare perspectives.

The committee met for the first time on 4 March laying the foundations for their role in guiding ASIF’s future work.

We are grateful for each of the members of the committee for their guidance and commitment to improving the lives of people living with axSpA.

The committee includes:

Tuncay Duruöz, Turkey – EAC Chair
Wilson Bautista-Molano, Colombia
Deniz Bayraktar, Turkey
Christine Bundy, UK
Moataz Daoud, Canada
Marco Garrido-Cumbrera, Spain
Muhammad Asim Khan, USA
Robert Landewé, Netherlands
Ajesh Maharaj, South Africa
Nadia Malliou, Greece
Helena Marzo-Ortega, UK
Mwidimi Ndosi, UK
Andri Phoka, Cyprus
Yeliz Prior, UK
James Cheng-Chung Wei, Taiwan

New Treasurer for ASIF

We are delighted to welcome René Bräm as ASIF’s new Treasurer. Rene is the director of the Swiss Ankylosing Spondylitis Association and is a board member and trustee of national associations and foundations in Switzerland. René has supported ASIF since its foundation, when for many years he was the treasurer as well as working as an auditor. With his renewed involvement as treasurer, he commented that he would like to contribute to people with axSpA being diagnosed earlier, being able to cope with everyday life and participate in social life despite the disease.

As our previous Treasurer, Susan Davies stepped down between AGMs, the Trustees co-opted René at their meeting in Istanbul in February. René will be invited to nominate himself prior to the election at the AGM later this year where ASIF members will have the opportunity to vote for him to remain in the role.

Meet our other Trustees

Introducing our new Trustees

Following our recent call for new Trustees, we are delighted to announce the successful appointments. Please read more about it here.

Following our recent call for new Trustees, we are delighted to announce the successful appointments. Prachee Bhosle, Julieth Buitrago and Nadia Malliou. The quality of applications was impressive, and we thank all who applied. The new Trustees will bring fresh ideas and expertise to the Board. I am sorry to report that Susan Davies resigned from her position as Treasurer.

The full Trustee Board is now as follows:

Zhivko Yankov, Chair

Lillann Wermskog, Vice Chair

Andri Phoka, Secretary

Prachee Bhosle

Julieth Buitrago

Tuncay Duruöz

Nadia Malliou

Cassie Shafer

Prachee Bhosle, India

Prachee is the President of the Ankylosing Spondylitis Welfare Society (ASWS), a patient-led charity in India dedicated to raising awareness and advocating for axSpA patients and caregivers.

Prachee holds a Master’s degree in Social Psychology and a Postgraduate Diploma in Counselling Psychology. While raising her children and taking care of several pets, she remained committed to social work and advocacy.

Prachee has represented ASWS at international platforms such as the GAfPA Roundtable in Brussels, the EULAR Conference in Vienna, the ASIF meeting in Bogota, and the PARE Conference in Brussels. She was also a member of the Novartis Health Advocacy Council. Prachee continues to balance her family life and advocacy work, striving to create positive change for the axSpA community.

Julieth Buitrago, Colombia

Julieth was born in Colombia and raised in Bogotá. She earned her degree as a lawyer and business administrator. She specialised in labour law, social security and business management and has an MBA in Business and Administration.

She was diagnosed with axSpA in 2010 and since then has worked to lead and support the axSpA community and those with other conditions.

In 2014, Julieth became a founding member of the Ankylosing Spondylitis Foundation in Colombia, an organisation created to spread knowledge of the disease through a network of multipliers, to advance early detection and support patients by improving their quality of life.

Nadia Malliou, Greece

Nadia recently started her PhD. Meanwhile, she’s a volunteer supporting patients in the Pain Unit of Thessaloniki General Hospital AHEPA. She has participated in several research projects either as a researcher or a patient research partner and has been an invited speaker in numerous conferences. Working with HCPs but most importantly with other patients has been a meaningful experience that contributed to her empowerment and self-improvement as a patient and a professional. Nadia’s inspirational quote is: everyone you meet is fighting a battle you know nothing about. Be kind. Always.

Focusing on Latin America

We are now increasing our focus on Latin America. This began last November at the EULAR PARE meeting of patient advocates. A few people from outside Europe had been invited, including a representative of the ASOPAN network of 60 Latin American associations that support patients with rheumatic conditions.

Through discussions over the following months, including at April’s PANLAR conference in Colombia, we realised there was a great opportunity to form a partnership between our two organisations. We can learn from ASOPAN about the key issues and challenges across Latin America, and then adapt ASIF’s support to best meet the regional context. This will help ASOPAN’s members integrate axSpA into their activities.

At next month’s Council meeting in Bogotá, our participants from Latin America will start work one day early with an extra meeting looking at the role of patient organisations in helping people with axSpA in Latin America. We will spend the day discussing the challenges facing people with axSpA in the region; gaining practical insights from ASIF’s Latin American members about how they address these challenges and support people with axSpA; and outlining a future programme of activity between our two network organisations.

We hope this will not only be a successful new initiative, but will also be a model we can adapt to other parts of the world. We are very excited about this and look forward to telling you more about it in future.

Rheumacensus

Navigating healthcare appointments with confidence

The challenges that come with axial spondyloarthritis (axSpA) can be varied, which calls for a personalised approach to care. Shared decision-making encapsulates this idea by bringing together the expertise of healthcare professionals (HCPs) and the lived experience of those with axSpA to create a strong alliance in the management of healthcare decisions. RHEUMACENSUS, an initiative led by HCPs, payors and patient representatives, is dedicated to elevating the standard of care for patients with axSpA. With the support of UCB, the initiative has launched a step-by-step guide to help patients prepare for their healthcare appointments. A similar guide has also been developed to support those with psoriatic arthritis.

How do these guides work?

Patients often feel rushed during their appointments, highlighting the need to create a tool that empowers them. By providing a step-by-step approach to follow and prepare for healthcare appointments, these guides encourage patients to consider:

1. Their current condition, goals for treatment and what they want to discuss in their appointment

2. Their role in making decisions about their management plan

3. How to communicate effectively with their healthcare team in both in-clinic and virtual appointments

Complete with prompts and examples of key questions that patients can ask, these consultation guides help to ensure that patient concerns are fully addressed. This is important to enable patients to gain a deeper understanding of their disease and management options.

This tool is also available for HCPs to offer and share with their patients, and ultimately aims to help patients achieve improved health outcomes.

View your copy of the axSpA consultation guide here.

ASIF is proud to have been involved in the development of the Guide. Andri Phoka, ASIF Trustee, provided input and guidance as a member of the Rheumacensus Consensus Council Members and was the lead on the axSpA patient representatives committee.

EULAR PARE Conference

The EULAR PARE Conference is an annual educational and networking event featuring a different topic each year and offering a high-quality programme for the RMD community with keynote speakers, debates and workshops spanning three days. Running from 28-30 November in Brussels, this year’s meeting focussed on the role of patients and patient representatives in rheumatology research.

Jo Lowe, ASIF’s Project Manager, represented ASIF at the conference and took part in several workshops exploring how to involve patients in research, including how to make collaborative research the standard approach and how to work with research consortia.

The workshops provided a fantastic opportunity to better understand barriers and to collectively develop solutions. The conference also provided valuable information on the EULAR manifesto campaign and advice on submitting abstracts to the annual EULAR congress. During the conference, several sessions were dedicated to Best Practice and Inspiration from the RMD community. These sessions give the opportunity to learn about PARE activities and projects presented by the community.

Patient and patient representatives from around the world presented almost 50 posters showcasing their work. Jo presented the ASIF poster about developing awareness materials on the ‘signs and symptoms of axSpA’. The winning poster was about a book developed especially for children with RMDs. The poster titled ‘THE BRAVERY BOOK: Malu’s Fantastic Hats for Dreadfully Annoying Rheumatism Days’ was presented by Caroline Kirsten from the German Rheuma Liga and a member of the Young PARE working group. You can read more about the book here.

American College of Rheumatology

Annual American College of Rheumatology annual meeting (ACR Convergence) 2024 took place November 14–19 in Washington, D.C.ASIF used ACR to continue dissemination of the International Map of Axial Spondyloarthritis (IMAS) findings. Drs Victoria Navarro-Compán and Denis Poddubnyy (pictured) from the IMAS Scientific Committee presented the poster on ‘Factors Associated with Pain Intensity in axSpA’.

The data analysis seeks to identify which factors, such as sociodemographic factors, lifestyle or comorbidities are most often reported alongside higher pain intensity. The poster identifies several factors, including difficulties in finding a job; poorer mental health; greater spinal stiffness and increased functional limitation; as well as a lower level of education (lack of university degree). The poster concludes that pain is a critical element and that to improve overall quality of life, pain reduction should be a priority of treatment.

Thank you to Drs Navarro-Compán and Poddubnyy for their continued support of IMAS.