Author: Joanne de Bry

   

The IMAS survey continues to expand and has now launched in the UK, Philippines and the USA. This provides the opportunity to collect invaluable data from people living with axSpA in these regions. The survey will be launched in Lithuania, South Africa and Argentina by the end of August and India is also expected to launch the survey in the near future.

The first Talk to be Heard video was launched on World AS Day and focused on patients’ experience of axSpA and the effect on their emotional health.  As part of the series, three more videos will be released in the coming months.  These will focus on the themes of working and living with axSpA; axSpA and relationships; and talking about treatment goals.  The ASIF team are working closely with Novartis to create a campaign around these short films that will encourage people to talk about the range of ways axSpA affects their lives – and ultimately support them in talking to their rheumatologist or loved ones.

New webpages, which bring to life the breadth of data from IMAS and powerfully depict the many ways that axSpA affects those living with it, will be published on the ASIF IMAS webpage soon. The new pages will help to communicate the lived reality of axSpA as well as provide a valuable tool for all those lobbying for change.

Read more about IMAS.

We currently have 200 registered members that have axSpA.

With a growing membership daily, our role has never been more important.

If we look at the world numbers, and we use a conservative estimate in South Africa of 1 in 500, we would be looking at roughly 160 000 patients with axSpA in South Africa. A lot of patients are not diagnosed or are diagnosed with mechanical back pain without having any treatment.

We have a huge, underdiagnosed situation in our country and if you think about the 80 rheumatologists we have and 60 million strong population, that is little wonder.

This problem spreads into Africa, where there are merely a handful of rheumatologists that service all the countries. Most of the patients are then sent to South Africa for treatment.

Voice of the Expert and Voice of the Patient Campaign

South Africa has been in lockdown for most of 2021. This has caused a great deal of anxiety and stress among our members.

      

To bridge that, we then aimed to make a connection, bringing the experts to our patients, in the comfort of their own homes.

The Voice of the Patient campaign was designed to bring live witness to patients that have axSpA, to share their own personal story with our members. This also creates the feeling of shared mutual disease burden and makes our patients feel less alone.

The feedback has been overwhelming and this has been the most asked for resource since we have launched this campaign

This has also given our rheumatologists the chance to get involved with the axSpA community.

     

Walk Your AS Off

South Africa walked this year in full force, and more than doubled our steps to over 7 million. More than 42 members participated in this event.

Walk Your AS Off takes place in May, and is a one of many activities around World AS Day.

– By Maranda van Dam, Chairperson of Axial Spondyloarthritis Association of South Africa

Find out more about the Axial Spondyloarthritis Association of South Africa.

EULAR highlighted the project in an Abstract presentation, a Poster and a press release here 

Dr Dale Webb, from the Delay to Diagnosis Sub Committee and Chief Executive of NASS, delivered the Poster presentation and Abstract presentation during EULAR 2021. EULAR’s recognition has been welcomed by everyone involved in the project. It has given ASIF an opportunity to raise awareness of the key issues created by the delay to diagnosis with rheumatologists and other key stakeholders from around the world.

 

Thank you to EULAR for recognising the importance of the report.

Please read EULAR’s  Press Release

 

The Delay to Diagnosis Report will be published on 28 June and ASIF will hold two launch events on 7 July.

Find out more.

IMAS Wins EFPIA’s Connecting Healthcare Award!

EFPIA’s independent jury chose IMAS as the overall winner from 60 projects

 

“Alongside our partners, Novartis and the University of Seville, I am proud to accept the 2021 Connecting Healthcare Awards – thank you EFPIA. I am delighted that IMAS has been recognised for the significant impact it will have on the lives of axSpA patients. Thank you to all the IMAS partners and the patients who have participated.” – Zhivko Yankov, President of ASIF

The European Federation of Pharmaceutical Industries and Federations’ (EFPIA) independent jury chose IMAS as the overall winner from 60 projects.

By working closely with Patient Organisations, clinicians and researchers, we have gained evidence about how people with axSpA experience their disease, physically, psychologically and socially.

Jo Lowe, ASIF’s Project Manager, and our colleagues from Novartis and the University of Seville talk about how they worked together on this important project.

Thank you to the thousands of patients around the world who have participated in the IMAS project and have helped us uncover the issues that are most important to them.

Here below the first IMAS Video capturing the experiences of real patients and how axSpA impacts their emotional wellbeing and mental health.

 

We are delighted to welcome three new members to ASIF: Hellenic League Against Rheumatism in Greece, the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) and Ankylosing Spondylitis  Welfare Society in India.

Hellenic League Against Rheumatism Hellenic League Against Rheumatism was established in 1978 in Athens and today has 7,700 paid members and followers. The league has nine branches in main cities across Greece and enjoys strategic cooperation with​ a number of related organisations. Read more

The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) helps those who are affected by autoimmune and autoinflammatory diseases – with arthritis as a major early component. It supports them to use their voices – as equals alongside other stakeholders – to solve problems that impact education, advocacy, and research. Read more

 

Ankylosing Spondylitis  Welfare Society (ASWS) Ankylosing Spondylitis Welfare Society is a pan-India organisation formed by AS patients to help support fellow patients. Their aim is to reduce the delay in diagnosis so that axSpA patients are able to enjoy a better quality of life. They are keen to provide emotional support to patients and their caregivers and let them know they are not alone in this new journey in their life. They are determined to get Ankylosing Spondylitis / Axial Spondyloarthritis included in India’s National Insurance, so that no patient suffers due to lack of funds. ASWS want to provide as much financial assistance as possible for patients so that they can realise their dream of living as normal a life as possible. Read more

In the last few months the Trustees have approved applications from 3 different countries and the number of ASIF’S members is now 47!

Welcome to Fondation Enayarthrite Algérie Spondyloarthrites, in Algeria, StandForAS in India and ACE Arthritis Consumer Expert and its JointHealth™ family of programs in Canada. We look forward to working with you.

Recently founded or established large associations we are proud to be able to link all of them as ASIF is an international membership organization representing patient associations around the globe specializing in the support of patients with Axial Spondyloarthritis (axSpA)

 

 

 

 

 

 

 

 

Walk Your AS Off is a virtual walk event to get moving and raise awareness for axial spondyloarthritis.

We encourage you to  “Walk Your A.S. Off!” in order to stay active and to keep your joints working as well as possible.

Most people with axSpA benefit from regular exercise. Unfortunately, many of us don’t exercise enough.

Walking is a fantastic form of low impact exercise – so let’s get moving!

Join our global community – there are teams from all over the world! You can participate as an individual or create your own virtual team and start counting and logging your steps.

We know that the current situation is difficult and not ideal for long walks but even walking around the block just to keep moving will be perfect!

For more details on: Why do we Walk? Who can participate? Why have teams? How do I sign up? How can I make a team? When do I log steps? How can I find out more information? and Resources

For more information and how to take part in this event see asif.info/what-is-walk-your-as-off/

More useful suggestions for Covid-19 distancing here below

Save the date, May 1-7, 2020

Registration is now open for the Global Spondyloarthritis Summit 2020

Save the dates, 1-7 May 2020, for the SAA’s 2nd Annual Global Spondyloarthritis Summit.  This year’s virtual Summit will feature 12 international experts presenting on topics such as pain management, advances in treatment options, diet & nutrition, exercise, progress in research, medicinal cannabis, and more.

There is no cost to register and participation is strongly recommended for anyone impacted by axial spondyloarthritis, whether it is you or a loved one.

This year the videos will come with subtitles in the following languages:  Spanish, Ukranian, French, Italian, Bulgarian, Russian and Chinese.

Register here