Category: ASIF News

Spotlight on IMAS

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Shining a spotlight on the real-life impact of axSpA

The Spotlight on IMAS event brought together people living with axSpA, representatives from patient organisations, rheumatologists, researchers, and some of our industry partners. On the eve of EULAR 2024, the Wiener Rathauskeller in Vienna proved the perfect venue to welcome attendees from Brazil to Norway, South Africa to Canada, India to Ukraine. 

Andri Phoka, ASIF Trustee, welcomed everyone, provided an overview of IMAS and thanked Novartis for transferring ownership of IMAS to ASIF.  

Professor Marco Garrido Cumbrera explored the IMAS findings and their real-life impact. Punctuating Marco’s presentation were videos from people around the world who shared the impact that axSpA has had on their lives. Annie from Australia shared how her delay to diagnosis led her not to have children; in Colombia axSpA prevented a young woman from working, leading her to be financially dependent on her father. Tsleng from South Africa described how she lost friends as they didn’t understand what she was experiencing. Andri from Cyprus shared how axSpA is just one of the physical conditions that she faces, alongside Chron’s disease and hypertension and how managing all her physical symptoms is incredibly challenging.  

The recently published IMAS report, “The Burden of Axial Spondyloarthritis: a global patient perspective” underlines that axSpA is not simply a physical disease that needs to be treated. It impacts every area of a person’s life and life choices. Therefore, the average seven-year delay to diagnosis must be reduced and healthcare professionals need to consider the impact on an individual, focusing on quality of life and providing multidisciplinary care.  

Dr Victoria Navarro Compán, President Elect of ASAS, spoke about her pleasure at seeing the IMAS project develop from the national survey in Spain in 2017 into a European and then a global initiative; the importance of the IMAS findings; and the potential of them to educate healthcare professionals and influence clinical practice.   

Mike Mandelbaum, Executive Director of ASIF closed the main presentations by sharing ASIF’s plans for IMAS in the future. He shared that IMAS will be a cornerstone of a new advocacy strategy which ASIF will develop over the coming months.  

He commented “Most change happens at local and national levels, so we plan for more of our work to respond to national and regional social and healthcare systems dynamics and priorities. We therefore plan a regional Latin American IMAS report, which will compare individual country data to aggregated regional data in ways which shine a spotlight on where individual countries are performing well or poorly against their closest peers. We believe this can become a powerful advocacy tool.” 

Questions and a panel discussion followed the presentations, focusing on how the IMAS Report can be used at a national level.

Over dinner, attendees continued conversations about the impact of axSpA in their countries and how the IMAS Report can be used to leverage change.  

Thank you to our presenters and to everyone who attended the event. If you have questions about the event, about IMAS or how you can use the IMAS Report in your country, please contact Jo Lowe.      

Read IMAS Global Report

Biosimilar Medicines

AxSpA patients were recently represented at a biosimilar medicines patient leader workshop organised by Medicines for Europe. Rene Anour, Chair of the Biosimilar Medicines Working group at the European Medicines Agency (EMA) and Sarah Ikenberry from the US Food and Drug Administration (FDA) (pictured left) heard from ASIF’s Jo Lowe as she shared her thoughts on what people living with axSpA need to know about biosimilar medications. Both Rene and Sarah play a key role in providing patients with accurate and helpful information about biosimilar treatments. 

About 20 patients and patient representatives from different disease areas attended the workshop, along with biosimilar manufactures. They each gave their view on what the most important considerations are when patient information about biosimilar medicines is put together. Opportunities like these are invaluable for ensuring the patient voice is heard by those creating drug-related information for patients. The event took place in Amsterdam on 17 April.

Following the workshop, Jo attended the annual Biosimilar Medicines Conference.  The event addressed the main challenges in increasing patient access to biosimilar treatments, including building a European biosimilar strategy and how the impact of new policies can be measured.  Sessions were also held on planning for future treatment needs and regulatory policy.

ASIF Council Meeting 2024: Colombia

 

ASIF members from around the world will gather in Columbia in October for our Council Meeting.

We have registrations from all continents and expect this to be the biggest ever meeting of organisations supporting people living with axSpA.

All participating organisations will have the opportunity to present a poster and there will be plenty of time to network and to share ideas.  The programme will incorporate talks, panel sessions and workshops and will include:

  • The role of patient organisations in improving knowledge, attitudes and skills among healthcare professionals
  • IMAS and the wider patient-focused research agenda
  • Key axSpA issues in Latin America
  • Emerging therapies and new research in axSpA
  • The provision of psychosocial support by patient organisations: needs, gaps and best practice from around the world
  • Building the visibility and role of patient organisations in professional rheumatology networks.

In addition, we will hold a regional meeting for members and other stakeholders from Latin America on the afternoon of 16 October, the day before the main meeting begins.

We are very grateful to Julieth Buitrago from our Colombian member, Espondilitis Anquilosante en Colombia for her continuing help with the logistics.

If you have not yet registered or have questions, please contact Jo Davies. There is still plenty of time to get involved!

 

Spotlight on IMAS

 

Our celebratory ‘Spotlight on IMAS’ reception in Vienna is only days away. The event, the evening before the EULAR congress starts, will bring together our members, industry, healthcare professionals and key stakeholders.  ASIF’s new ownership of IMAS is an important milestone and will help to inform ASIF’s future work.  IMAS continues to help us understand how we can best support our members and provides us with exciting new opportunities.  

The event will take place at the Wiener Rathauskeller from 18:30 to 21:30 on Tuesday 11 June.  We will explore the key findings from IMAS and hear the real-life experiences of people who live with axSpA.  Dr Victoria Navarro Compán, President Elect of ASAS, will give the Keynote address, alongside presentations by Dr Marco Garrido Cumbrera from the University of Seville, ASIF Trustee Andri Phoka, and our Executive Director, Mike Mandelbaum.  

We hope to see you there.

 

RSVP here

IMAS in 2024

 

IMAS in 2024

Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA.  The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with symptoms get an accurate diagnosis with minimal delay and the ongoing support and care they need.   

Webinar, 13 March

To showcase the report and discuss what the evidence and calls to action mean for patients and patient organisations, we are holding a webinar on 13 March (12:00 to 13:30 GMT).  As well as highlighting some of the key results from the report, we will hear clinician and patient organisation perspectives on how IMAS can be used as a tool for change.  Please email Jo Lowe to confirm your attendance. 

Spotlight on IMAS event, 11 June

A celebratory event will take place in Vienna, the evening before the EULAR congress commences. The event, on Tuesday 11 June (18:30-21:30 CET), will bring together our members, industry partners, rheumatologists, HCPs, and other key stakeholders.  It will be an opportunity to celebrate the success of IMAS so far, its transition to ASIF and the patient community; and to share our plans for the future. Please contact Jo Lowe to secure your place.  

 

Read the IMAS Global Report

Galapagos Patient Partnership Day

On 15 November, Mike Mandelbaum and Jo Davies from ASIF attended Galapagos’ first ever Patient Partnership Day at their Head Office in Mechelen, Belgium. The one-day event was attended by representatives from around 30 patient organisations mostly representing RMDs, and many Galapagos employees from around the world.

Galapagos Patient Partnership Day
Jo Davies from ASIF and Antonella Celano from APMARR

On 15 November, Mike Mandelbaum and Jo Davies from ASIF attended Galapagos’ first ever Patient Partnership Day at their Head Office in Mechelen, Belgium. The one-day event was attended by representatives from around 30 patient organisations mostly representing RMDs, and many Galapagos employees from around the world.

The aim of the day was to share ideas about what good patient engagement (PE) is.

Patient engagement is maturing. Patients are rightly becoming more important in research and with policy makers and pharmaceutical companies.

There were sessions covering best practice, the importance of shared decision-making in clinical trial settings. There was also an opportunity to take part in workshops in patient engagement and communications and health literacy. The day ended with a poster session and dinner. ASIF members were also present, including Antonella Celano from APMARR and Andri Phoka from Cyplar, EULAR PARE, Agora and an ASIF Trustee.

ASIF Council Meeting 2024

ASIF Members from around the world will gather in Columbia in October for our annual Council Meeting.

IMAS will feature as a central theme throughout the meeting. Presentations, discussions and workshops will include raising awareness among healthcare professionals, emerging therapies and research, and how our members can use IMAS to facilitate their work. One of the most anticipated sessions will be an opportunity for our members to present their organisations, campaigns and work. Importantly, delegates will have time to network, share ideas, build new relationships and create opportunities for collaboration.

Invitations have been sent and we look forward to assisting delegates with their attendance. Please contact Jo Davies (office@asif.info) with questions about the Council Meeting.

 

World AS Day 2024 Social Media Grants

ASIF is delighted to offer our members the opportunity to apply for a £500 World AS Day (WASD) Social Media Grant. The grant is to be used exclusively for boosting WASD social media posts and ads.  

In previous years ASIF has boosted WASD posts to countries where our members operate, however the posts have linked back to our website. We believe it would be more beneficial to people living with axSpA in those countries if the content was boosted on our members’ channels and linked directly to their websites. 

Photo of person typing on keyboard with social media icons

We understand that many of our members do not have the funding available for social media. We hope these six £500 grants enable members to raise awareness with more people during the WASD campaign period.   

Over recent years the algorithms used by the main social media platforms (Facebook, Instagram, X (formally Twitter) and Linked In) have made it increasingly difficult to reach significant numbers of people through organic (non-boosted) posts. Paid campaigns ensure that content is seen by more people and can be targeted to specific audiences.   

Eligibility: The organisation must be a member of ASIF. 

Number of grants available: 6 

Support: ASIF will run a webinar demonstrating how to boost posts and create ads, and use analytics to measure performance. It will also cover how to target specific audiences across each of the social media platforms listed above. All members are welcome to attend the webinar, regardless of whether they are a grant recipient or not. 

We understand that managing social media can feel overwhelming with all the different platforms and options, which is why we can arrange additional one-to-one or small-group sessions following the webinar. 

Post-WASD: It is a condition of the grant that the recipient provides feedback on the results of the boosting/ad campaign in terms of number of people reached and engagement levels etc. Details of the information required will be provided to the grant recipient prior to WASD. The report is not intended to be onerous, it will simply provide important feedback on the success of the campaign. This feedback will help to create a picture of the global impact WASD has and will help inform the decision to provide future grants.

Deadline for the Post-WASD Report: 8 June 2024

Application deadline: 10 January 2024 

Apply now

 

For more information or to arrange a short video call before applying please contact us. 

Obligations of grant recipient: 

  • When confirmation of the grant is provided to the organisation:
    • Sign the agreement
    • Provide bank account details

The grant recipient agrees to:

  • Spend the grant exclusively on paid social media – the grant must not be spent on staffing or other costs
  • By 8 June 2024: 
    • To complete the evaluation form provided by ASIF, detailing how the grant was spent and its impact  
    • To provide receipts to evidence the spend 
    • To return any unused portion of the grant to ASIF 

Decision Making Process

Applications will be considered by the ASIF team and endorsed by the Trustee Board, who work to the Charity Commission C27 guidelines on trustee decision making.

Grants are awarded entirely at the discretion of the trustees and their decision is final.

Criteria

The Trustees will consider the applications based on: 

  • Size of organisation (preference will be given to organisations with limited financial resources)
  • Current social media presence (preference will be given to organisations that have an existing social media presence – even if it is small)
  • The response in the application form to the question: How would your organisation use the grant to boost your social media activity in support of the World AS Day campaign?

Successful applicants will be informed by 31 January. 

Apply now

World AS Day 2024

Theme: Signs and Symptoms

Date: 4 May

The World AS Day social media assets have been created, the animations are ready, the webpage is live, and the Toolkit is ready for download!

It was great to see so many of our members and industry partners at our World AS Day Webinar on 6 February. If you missed it, you can watch the recording here. During the webinar, we explored the social media campaign, demonstrated how the social media assets can be tailored to local audiences, and previewed the animations.

The social media content calendar has now been added to the Toolkit. All the materials are available to download from the webpage.

Tell us about your event! Complete the online form and we’ll add your event to the World AS Day webpage and post about it on our social media channels.

Go to World AS Day webpage

Patient Resources

Image of three infographics

 

Did you know we have a set of three new infographics, which help to support people living with axSpA?  The resources aim to inform people how disease activity is typically measured; support them in building a partnership with their doctor; and assist them in focussing on their personal and lifestyle goals.

The first of these is an infographic that helps to educate patients on the commonly-used disease activity assessments, ASDAS and BASDAI.  As well as the tools themselves and the interpretation of the different scores, it also describes how inflammation is measured. 

Recognising that disease activity scores often do not tell the full story, the second resource provides guidance on discussing other measures of wellbeing with doctors.  It provides helpful tips on other areas of life that could be useful to talk about.

The third resource gives advice and support on setting personal goals.  It provides guidance on how to consider, set and monitor lifestyle goals that can help to motivate and bring meaningful improvements to wellbeing and quality of life.

The set of infographics have been developed to encourage people and give them more confidence in discussing their disease with their doctor.  You may also find that they are a useful resource for the rheumatologists in your network to give to their patients.  Please let us know if you think healthcare professionals would find them useful or if you decide to share them in this way.

There is an opportunity to translate the infographics for our members; please contact Jo Lowe (projectmanager@asif.info) to find out more. 

Find infographics and other resources