Joanne de Bry, Author at ASIF

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.

World AS Day 2025

World AS Day takes place on Saturday 3 May 2025.

This year the theme is ‘Lace up for axSpA’. The campaign highlights the everyday challenges of living with axSpA. Tying shoelaces is just one example of an ‘everyday challenge’ – the materials feature other tasks including drinking from a water bottle, checking traffic before crossing the road, reaching for something from a high shelf and bending to pick up something from the floor.

Working together, ASIF, our members, industry supporters and other key stakeholders, along with individuals who are affected by axSpA can raise awareness of axSpA with a global audience.

The World AS Day webpage is live and the campaign has begun with save the date messages being shared on social media. Over the coming months we hope to see many of our assets being shared across different challenges by you – our colleagues around the world.

The campaign assets have been designed to be used as is – or as templates. It is important that the campaign works for you and your organisation – so please translate and personalise the content. The most important thing is that you use it! If you aren’t able to post directly – please share our posts.

Vist the World AS Day webpage

The downloadable Toolkit provides information about the campaign and how you can best use it. A social media content calendar provides template copy for use on social media as well as the date on which ASIF will be posting key content (this is in the social media downloadable assets folder).

Editable social media assets have been created in Canva to enable them to be translated and adapted for use by our colleagues around the world. In addition to social media assets, there are website banners and email footers, both static and animated versions of the World AS Day logo. Non-editable assets are also available to download and are ready to be used.

See World AS Day Resources

A new short video and social media teasers have been created, featuring people living with axSpA completing everyday tasks. The videos tell a story of how these tasks can be challenging for people living with axSpA. If you would like the videos translated into your local language, please contact Jo de Bry. We recently held webinars introducing the campaign and sharing how to make the most of the materials. If you missed it, you can watch it by clicking on the link below.

Watch webinar

We invite you to ‘Lace up for axSpA’! Please share the corresponding social media posts and encourage your local community to get involved and raise awareness through their own social media channels.

Simply, take a photo or video of you tying your shoelaces – get some orange laces if you can – or you can use your regular laces. Post your photo or video on social media using #WorldASDay2025, #LaceUpForAxSpA and #EverydayChallanges.

Add something about your personal experience with axSpA – do you or a loved one have the condition?

You can add the following to your post:

World AS Day. Strength in Stories, Power in Connection (photo of shoes with orange laces)

I’m raising awareness about axial spondyloarthritis (#axSpA) by participating in #LaceUpForAxSpA on #WorldASDay2025.

You can add something about your story here.

Or use the following:

AxSpA is a chronic rheumatic disease that can cause severe pain and stiffness in the lower back, hips and buttocks and if left untreated can cause permanent damage to your spine. The pain often gets worse with rest and often appears before the age of 40.

Find out more at asif.info/worldasday

You can insert the URL to your organisation’s World AS Day webpage or an article on your website.

Hashtags

Use our hashtags to amplify your voice and be part of the conversation!

#WorldASDay2025, #LaceUpForAxSpA and #EverydayChallanges.

Events

Promote your events on our webpage! Simply complete the form on the page and we will promote the event on our site and on social media.

The Chronic Pain Club Talk Show

Tune into Joel Nelson’s Talk Show on Sunday 4 May at 19:00 BST. Joel will chat to ASIF Trustee and psychologist Nadia Malliou about all things World AS Day and her experience of life with axSpA.

Visit Joel’s YouTube channel

Alfasigma’s World AS Day Webinar

Alfasigma will raise awareness with their staff about axSpA during a webinar. Jo Davies, Jo Lowe and Jo de Bry will speak about ASIF, World AS Day, IMAS and living with axSpA.

We would be delighted to assist industry, our members and other stakeholders in raising awareness. Please contact Jo de Bry to find out how we can help.

Global Spondyloarthritis Summit

Registration is now open! Join us on May 2-3, 2025, for the Spondylitis Association of America’s 7th Annual Global Spondyloarthritis Summit—a free, virtual event bringing together top experts to explore the latest in SpA care.

This year’s theme: “Comorbidities: A Whole-Body Approach to SpA”. Explore how SpA connects to cardiovascular disease, IBD, osteoporosis, mental health, pain and fatigue, uveitis, and more.

Event Details:

Dates: May 2-3, 2025
Time: 8:00 AM – 4:00 PM PDT
Location: Online – Join from anywhere in the world!
Cost: FREE

See agenda and register

For the first time the Summit will include a Virtual Poster Hall. ASIF members are invited to submit a poster and presentation about their work. Contact Jo de Bry at ASIF if you have any questions or to find out more.

Walk Your AS Off

Walk Your AS Off has taken on the World AS Day theme! The SAA has produced durable, vibrant orange laces with SAA branding that will be eye catching on your sneakers. The SAA encourage you to wear your orange shoelaces while you count steps for Walk Your AS Off for greater visibility and conversation!

Order shoelaces*

Walk Your AS Off is an international virtual walking event! You can walk anywhere at any time, log your steps and be part of this exciting initiative to get people moving whilst raising awareness about axSpA.

Find out more and register

*North American shipping only. For international orders, please contact Sean Ewert at sean.ewert@spondylitis.org.

World AS Day Social Media Grants

ASIF awarded full World AS Day Social Media Grants to Axial Spondyloarthritis Association of South Africa, Bekhterev Norge (Norway), Coordinadora Española de Asociaciones de Espondiloartritis (CEADE) (Spain), Panamanian Arthritis Foundation of Panama (FUNARP), Hellenic League Against Rheumatism (ENEANA) (Greece).

We also granted matched grants to Canadian Spondyloarthritis Association (CSA) and Instituto Gruparj Petrópolis (Brazil).

We are excited to see how the grants help each organisation raise awareness during the World AS Day campaign.

Find out more about World AS Day

The Pursuit of Remission and Improved Quality of Life in axSpA

Join the Global Alliance for Patient Access (GAfPA) and ASIF’s for a webinar highlighting the value of pursuing remission in rheumatic and musculoskeletal diseases.

ASIF Trustees Nadia Malliou and Lillann Wermskog, and Jo Lowe, Project Manager at ASIF, will be talking to Neil Betteridge, Strategic Advisor for European Alliance for Patient Access, about axSpA, an overview of the disease, an introduction to ASIF and IMAS data and the value of achieving remission or low disease activity from a personal perspective as a patient.

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.

APMARR

Associazione Nazionale Persone con Malattie Reumatologiche e Rare (APMARR), celebrated its 40th anniversary last year. APMARR’s mission is “to improve the quality of assistance and to improve the quality of life” offering help and information to people with rheumatic and rare diseases through volunteering, psychological support, awareness campaigns. APMARR runs national and local activities throughout the year, including free screening to assist in early diagnosis. It’s advocacy efforts include organising workshops and meetings with political decision makers and media to highlight the social and human rights of children and adults with rheumatic diseases.

Picture of tablets and phones showing APMARR's resources

APMARR also promotes research in the field of rheumatology. On its 40th anniversary, APMARR launched a research project, conducted by WeResearch Institute, investigating the quality of life for people affected from rheumatic and rare diseases.

The results suggest that the negative impact rheumatic diseases have, may result in people having to rethink and reshape their “Life Plan”, particularly in relation to work, leading to a reduction in hours, change in job or having to stop work.

The study suggested that people who were unaffected by rheumatic diseases didn’t feel they had enough information about the conditions. It is thought that this lack of understanding in the general population is a contributing factor in the delay to diagnosis.

In recent years, research has better understood the mechanisms underlying numerous rheumatologic diseases. It has identified the role of inflammation and therapeutic targets, and developed innovative drug classes that can block the inflammatory cascade and lead to remission, if not cure. The goal of these medicines is to prevent disease progression and disability.

This new scenario necessitates a review of the changes in treatment and the diagnostic paradigm and, therefore, a revision in the language used to talk about rheumatologic diseases. The language must adapt to innovation, emerging needs and to the increased awareness of patients, who must be active participants in their treatment pathway.

Picture of a book called: “vocabulary of rheumatology" that APMARR has produced

For this reason, APMARR launched an educational project named “The vocabulary of rheumatology” to help patients navigate the wealth of information found on the web. It provides them with the tools to become protagonists of their own care pathway, exploring the terms that accompany the world of rheumatology. These terms come from the scientific sphere, including those related to drugs and biomedical science. This project is aimed at patients and caregivers, with the goal of familiarising them with the lexicon of rheumatology and making the concept of empowerment and engagement tangible.

The “vocabulary of rheumatology” is one of several initiatives promoted by APMARR to educate and inform people on the rheumatic and rare diseases. APMARR also involves and assists people through the toll-free number, its magazine “Morfologie” and its social media which reaches an online community of more than 5,000 users.

Patient representation is essential before health authorities since policies are changing and it is necessary to have their opinion on those reforms that may affect medical care and treatments. To this end, the Foundation interacts with other patient organisations to defend and voice their needs. Additionally, the Foundation has legal advice in situations of inconveniences in the provision of services as well as in the recognition of economic benefits such disability pensions.

Every day the Foundation is strengthened by the work carried out, generating positive impacts in the community and promoting solidarity among patients. We are grateful to all the volunteers who participate in the development of our work.

Find out more about APMARR

See all ASIF Members

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.

Making Access Happen

As we know, timely access to affordable and appropriate medications can significantly improve health outcomes and enhance quality of life. By expanding treatment options and promoting competition, generic and biosimilar medicines can improve access, sustainability of healthcare systems, and alleviate the societal burden of untreated illnesses.

Patient organisations provide a powerful voice for patients and can help policymakers understand the perspectives of the patient community as they work to implement better health policies. Many of our members play a vital role in enhancing access to medicines, educating their communities and empowering patients to make informed decisions.

Recently, ASIF participated alongside 30 patient advocacy leaders from 18 countries, in the Making Access Happen: Sandoz Global Access Forum.

One of the key highlights of the Forum was the Making Access Happen Consensus Statement, co-created with patient advocates worldwide, that addresses key strategies to make healthcare more accessible through generic and biosimilar medicines. The contributors outline 6 key actions:

Together, the patient advocates agreed that collaboration between patient organisations, healthcare providers, policymakers, pharmaceutical companies, and other stakeholders is essential for driving initiatives that improve access to medicines.

Our members can join the conversation on social media using #MakingAccessHappen. We will be sharing social posts about the campaign and encourage our members to share our posts or contact us for access to the content.

Download Consensus Statement