Joanne de Bry, Author at ASIF

Rheumacensus

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.

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.

First Latin American Regional Meeting

ASIF Council Meeting 2024: Member Posters

During the ASIF Council Meeting our Members had the opportunity to display and present posters about their work.

It is inspiring to see the incredible efforts being undertaken around the world to improve the lives of people living with axSpA.

New President for CEADE

It is with great enthusiasm that we inform you that after the CEADE General Assembly held in Cordoba on June 29th 2024, it was agreed that a new Board of Directors would assume the responsibility of the organisation.

Marco Garrido, who already served on the Executive Board as liaison with ASIF, has been elected as the new President, accompanied by an experienced team of patient representatives.

Marco has extensive experience in axSpA research, being responsible for the REUMAVID study, the Atlas of Axial Spondyloarthritis in Spain, the European Map of Axial Spondyloarthritis (EMAS) and the International Map of Axial Spondyloarthritis (IMAS), collaborating with rheumatologists from ASAS, several scientific societies in Rheumatology and patient representative members of ASIF, and rheumatologists and entities from more than 25 countries.

We thank Pedro Plazuelo Ramos for his great dedication and hard wor.k during the last 12 years as President of CEADE. His legacy has been fundamental for the positioning and credibility of the organisation.

ASIF would like to congratulation Marco and thank Pedro for his commitment to improving the lives of people living with axSpA. Marco is an invaluable supporter of ASIF and collaborator on IMAS.

Fundación de Espondilitis Anquilosante en Colombia

Since its creation, the Ankylosing Spondylitis Foundation in Colombia has contributed to helping those patients recently diagnosed, guiding, and promoting care to achieve a better quality of life and effectiveness in treatments or medical recommendations. The work carried out by the Foundation is achieved through social networks such as Facebook, Instagram, YouTube, LinkedIn and WhatsApp through which patients, caregivers, family members or other actors seek information and advice on Spondyloarthritis.

Patients are fundamental in the development of our mission, since we have sought to create a network of patients who multiply knowledge, who through education achieve empowerment for decision-making by making them participate in the responsibility of their care and in what can affect their health status. Likewise, we teach patients to have the ability to prepare their medical consultations in order to improve the doctor-patient relationship and ensure that health care is effective.

It is important that the Foundation seeks to raise awareness in society about Spondyloarthritis, which is an invisible disease in some cases and for which there is a lack of knowledge both in citizens and in the primary health care medical community; thus, through information campaigns in health care centers or public places, we deliver brochures that can raise awareness about a medical condition.

We have the support of stakeholders such as the academic and medical community who value the patient as an important actor in their research, trials, studies and seek to work hand in hand to innovate in pharmacological and non-pharmacological treatments and to have a better understanding of the condition in the patient by analysing the impact that a chronic disease brings with it.

We develop face-to-face meetings for patients, caregivers and family members that have the purpose of knowing and exchanging experiences, learning relevant aspects through the direct interaction of patients and health professionals.

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

Bringing Together Patient Representatives at the ASIF Council Meeting

Perhaps the most important outcome from the meeting was the sharing of experiences and the strengthening of new and existing relationships.

Running a patient organisation is incredibly rewarding but also hugely challenging. Knowing that the challenges faced are not unique and hearing how others have overcome them is incredibly powerful.

Delegates heard a presentation on emerging therapies and research in axSpA and participated in workshops exploring what research is needed to support the work of patient organisations. They participated in a panel discussion on improving axSpA knowledge among healthcare professionals and heard about how they can help strengthen relationships between patient organisations and professional rheumatology bodies.

One of the most popular sessions focused on psychosocial support – where the gaps are, how patient organisations can support their members and best practices to overcome barriers. Throughout the meeting, delegates were invited to present a poster about their organisation, facilitating the sharing of experiences and an increased awareness about how different organisations work around the world.

“Learnings from the speakers, the moderators, the workshop leaders and the new information and knowledge acquired from other participants”, this was one of the responses to the question ‘what did you like best about the ASIF Council Meeting?’.

Much of what was discussed at the meeting will go on to inform ASIF’s work going forward. A full report on the ASIF Council Meeting, which was held in Colombia in October will be available early in the new year.

View our Members’ Posters

Thank you

A message from Zhivko Yankov, President of ASIF

“I would like to acknowledge two individuals who have played an essential role in ASIF’s journey: Raj Mahapatra and Maranda van Dam. Both have served ASIF with remarkable dedication and passion over the years, and their work has had a profound and lasting impact on the organisation.

“Raj, your wisdom and strategic insights have been invaluable. From guiding critical decisions to helping shape the future of ASIF, your leadership has steered us through both challenging and prosperous times. Your thoughtful contributions have left an indelible mark on this organisation, and ASIF is stronger because of your efforts.

“Maranda, your tireless work and commitment to ASIF’s mission have been nothing short of inspiring. You have been a driving force behind many of our key initiatives, and your passion for supporting people living with Axial Spondyloarthritis has brought us closer to our goals. Your dedication has made a tangible difference in the lives of those we serve.

“ASIF is what it is today because of the hard work, dedication, and vision that both of you brought to the table. We will forever be grateful for the time and energy you’ve invested in helping us grow and thrive. “On behalf of everyone at ASIF, thank you both for your service. While we will miss your presence on the board, we know that your contributions will continue to echo throughout the organisation for years to come. We wish you both all the best in your future endeavours and hope that our paths will cross again soon.”

World AS Day 2024 – Report

Thank you to our members for providing feedback on this year’s World AS Day campaign. Understanding what worked, what could be improved and hearing your ideas for future campaigns is invaluable as we evaluate the campaign’s success and begin thinking about 2025.

We are delighted that the social media grants we awarded raised a significant amount of awareness about axSpA and the work of our members.

Read our Report

World AS Day 2025

World AS Day 2025 will take place on Saturday 3 May. Each year a Sub Committee made up of our members chooses the theme and guides the development of the campaign. If you would like to join the Sub Committee, please contact Jo de Bry (communicationsmanager@asif.info) before 30 September.