Month: December 2021

 

27 countries have contributed to IMAS

27 countries across five continents have now taken part in the International Map of Axial Spondyloarthritis (IMAS) – the biggest ever survey of people living with axSpA.  IMAS collects information about the impact of axSpA on all areas of life and is now in its final stages.

 

So far, almost 4,500 people worldwide have responded to the survey.  In 2022, we will have a set of data that represents the experiences of people living with axSpA around the world.  IMAS gathers and shares data on how people with axial spondyloarthritis (axSpA) experience their disease physically, psychologically and socially.

 

We thank our members that have supported the IMAS survey; without you, it would not be possible to collect this vital information.

 

 

Learn more about IMAS

 

We are developing the World AS Day 2022 campaign with guidance and input from our Sub Committee, made up of representatives from our member organisations.

The campaign will focus on general awareness raising, rather than focusing on one impact of axSpA.

We look forward to sharing more detail with you in the new year.

The first set of World AS Day assets for the 2022 campaign will be emailed to you, they include the logo, three Save the Date assets (sized for Facebook, Twitter and Instagram), along with a blank template that you can insert translated copy into.

Please share the images on your social channels to raise awareness of the upcoming campaign.

 

Please use the hashtag:

#WorldASDay2022

in all posts/tweets so that we can track engagement.

 

We will run webinars for our members to introduce the campaign, as we did last year. I look forward to inviting you to these events in the new year.

 

The Global Summit,

The Global Summit, hosted by the Spondylitis Association of America (SAA) will take place from 6-7 May. As a supporter of the Summit, ASIF will fund the translation of the presentations in a variety of languages again this year.

Zhivko Yankov encouraged members of the Bulgarian Association to attend the summit. He commented, “Having the presentations available with Bulgarian subtitles made the Summit content accessible to our local axSpA community. The sessions contained really interesting and beneficial information. I will be encouraging our members to attend again next year, and urge you to do the same.”

Last year the sessions were translated into languages including: Bulgarian, French, German, Greek and Russian. Please contact us if you would like to have the presentations translated into your language.

 

Walk Your AS Off

We hope to increase participation in Walk Your AS Off this year. The annual walking challenge encourages participants to get moving through the month of May. We know that walking can be of great value to people living with axSpA, but sometimes it can be hard to make time to go for a walk. Walk Your AS Off helps to motivate people to count their steps – whether it is going for a walk in the countryside, getting off the bus a stop earlier and walking that extra distance into work, or walking to the local shop instead of driving there.  Other forms of exercise can be converted into a step count, for example swimming, yoga or even doing housework! Registration will open in April for this fun and active event.

 

Thank you to the members of the subcommittee who are helping develop this year’s campaign.

 

Over many years, many Patient Organizations (POs) have met with members of the American College of Rheumatology (ACR) to discuss increased PO participation at annual scientific meetings, however to date little has been accomplished to implement change. Recently, other issues involving PO conference registration and membership status have been brought to the ACR’s attention and, as a result, the door to discuss the potential for increased PO has reopened.

The contribution of POs to the rheumatology landscape over the last several decades has evolved, and what each group brings to the table can vary. Therefore, to fully capture the depth of value POs can contribute, the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)* is uniting POs and allied collaboration groups who are interested in sharing their thoughts and perspectives on this matter. Given the ACR is undergoing a process to reimagine the landscape of future Convergence meetings, it seems the time is finally right to proceed!

If you are affiliated with a PO – or an allied research collaborator (research organization or institute, databank, or government) would like to be part of these conversations, please complete this form by December 15^th, 2021.

This form is not for individual patient sign on. Another letter will be distributed in January 2022 for patients with rheumatic conditions who would like to support heightened PO presence, and in turn, greater patient representation, at future Convergence meetings.

If you have any questions about this initiative, please contact Tiffany Westrich-Robertson, CEO, AiArthritis at tiffany@aiarthritis.org.

 

*The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) recognizes and greatly appreciates the persistency of those organizations and individuals who, over many years, have started conversations with the ACR regarding increased inclusion and participation at annual scientific meetings. As a patient-led, international organization in the rheumatology space whose mission is to help unite patient voices with other stakeholders to solve problems together, we have offered to facilitate and manage this effort.

 

Direct link to form: https://forms.gle/MJv1J4KVGwPByV318

To tag AiArthritis in social media posts: @IFAiArthritis