Experience our Delay to Diagnosis Report Launch event
Thank you for visiting the event page for ASIF’s Delay to Diagnosis Report launch. For those of you able to attend the event, we hope you found it as valuable as we did. We were delighted to welcome over 40 attendees at each of the two events, representing 25 countries and 6 continents.
The report launch was an important milestone for ASIF’s Delay to Diagnosis project. It provided a platform to hear the key challenges and impacts involved with the axSpA diagnostic delay. The live panel discussions also gave attendees, many of whom were contributors to the ASIF report, the opportunity to explore what needs to happen next to make progress in reducing the delay.
You can view the agenda for the 08:30 (BST) event here and watch the full event here.
The live panel discussion explored questions from the audience including: ‘One of the report's recommendations is broader awareness campaigns; how can we do this with primary care professionals?’ and ‘What are the barriers to engaging with governments in tackling the delay to diagnosis in axSpA and what are some strategies that have worked to date?’.
- Dr Shashank Akerkar: Consultant Rheumatologist, Mumbai Arthritis Clinic and Research Centre and Founder of StandForAS Foundation, India
- Dr Floris van Gaalen: Consultant Rheumatologist, Leiden University Medical Centre, Netherlands
- Dr Dale Webb: CEO, National Axial Spondyloarthritis Society, United Kingdom
- Annie McPherson: President, AS Victoria, Australia
- Kel Arceo: Patient advocate, Philippines
- Dr Helena Marzo-Ortega: Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust and Chair of the British Society for SpondyloArthritis, United Kingdom
You can view the agenda for the 16:00 (BST) event here and watch the full event, including live panel discussion here.
The live panel discussion explored questions such as whether we need to put more resources into paediatric diagnosis, given that so many people experience their first symptoms at a very young age; and how we can raise awareness about types of back pain, and how we target these messages.
- Dr Muhammad Asim Khan: Professor Emeritus of Medicine, Case Western Reserve University, Cleveland USA
- Dr Wilson Bautista: Consultant Rheumatologist, University Hospital Fundación Santa Fe de Bogotá and Universidad de los Andes, Colombia
- Lillann Wermskog: Leader, Spondylitis Association of Norway
- Maranda van Dam: Chairperson, Axial Spondyloarthritis Association of South Africa
- Ricky White: Patient advocate and President of Walk AS One, USA
If you were present at one of our virtual launch events, you will have seen three short films that tell the stories of axSpA patients Maranda, Annie and Kel. We thank them enormously for sharing their experiences about the impact that their own delayed diagnosis has had on their lives. Please share the films to raise awareness of the profound damage that delayed diagnosis in axSpA can cause.
You can also find the individual presentations from Dr Shashank Akerkar and Dr Floris van Gaalen on our resources page.