Category: Conferences and events

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.

Read more about the Meeting in our Report

 

Focusing on Latin America

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.

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. This helps ASIF provide support which reflects the real-life challenges facing patients and our member organisations.

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.

Globe with Latin America visible

EULAR PARE Conference

Jo Lowe presenting at 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.

 

Pain intensity poster

First Latin American Regional Meeting

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.

 

 

Collaboration is a vital step in improving the lives of people living with axSpA. ASIF and The Pan American Network of Associations of Rheumatic Patients (ASOPAN) held a joint Latin American Regional meeting the day before the ASIF Council Meeting began in Bogotá. This meeting was the first of its kind and resulted in representatives from Patient Organisations in Brazil, Chile, Panama, Mexico, and Colombia sharing experiences and discussing the needs of their members.

Signing of MOU between ASIF and ASOPAN

ASOPAN (The Pan American Network of Associations of Rheumatic Patients) is a network of patient organisations throughout Latin America supporting patients with RMDs.  Of their members, few specialise in axSpA and many have limited knowledge of the disease.  One objective of this meeting was to explore how ASOPAN and ASIF could work together.  After a stimulating day of discussions and learning, it was agreed that ASOPAN would create a working group on axSpA and ASIF would assist in the development of a workplan to educate patient organisations in the region on axSpA.  This would both enable them to better support people living with axSpA and raise awareness of the disease across the continent.

ASIF and ASOPAN signed a Memorandum of Understanding (MOU) which will underscore our future work together. Both foundations, along with the patient organisations are committed to using this partnership to improve the lives of people living with axSpA across Latin America.

A report on this meeting will be available soon. 

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

 

ASIF Council Meeting 2024: Update

 

45 representatives from ASIF Members from 25 different countries will gather in Colombia in October for our biennial in- person Council Meeting.

The programme includes workshops and discussions with our members to help guide ASIF’s work.

Members have the opportunity not only to learn about the latest research in axSpA but also to workshop new programme ideas, share their own work, and discuss how to address organisational challenges.  It is an opportunity for ASIF to gather important information about what is happening on the ground across the world to inform how we can better provide support to our member organisations.

Download the full programme.

ASIF Council Meeting 2024 Programme

 

The programme will include:

  • The role of patient organisations in improving knowledge about axSpA among healthcare professionals
  • IMAS (International Map of Axial Spondyloarthritis) and the wider patient-focussed research agenda
  • Clinical updates from Dr Wilson Bautista (regional) and Dr Raj Sengupta (global)
  • The provision of psychosocial support by patient organisations
  • Strengthening relationships between patient organisations and professional rheumatology networks
  • Opportunities for member organisations to share their own work.

 

For our members who will attend – please send your poster so that you can participate in the member presentations.

If you wish to attend and have not registered or if you have any questions about the Council Meeting, please contact Jo Davies (office@asif.info) as soon as possible.

 

 

The Council Meeting educational programme is sponsored by Novartis, AbbVie and UCB

Abbvie, Novartis and UCB logos

Reporting on EULAR 2024

Attending EULAR is one of the highlights of ASIF’s year. It is an opportunity to share our work with the international rheumatology and healthcare community, connect with our members and meet with our supporters.

The axSpA patient community played an important role at EULAR, representing the international patient voice in one of the biggest rheumatology meetings in the world. We are proud to share reports on some of the work that ASIF members, trustees and staff presented at EULAR and their experiences of the meeting.

Read EULAR Report

Focusing on Latin America

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.

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. This helps ASIF provide support which reflects the real-life challenges facing patients and our member organisations.

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.

Globe with Latin America visible