World AS Day 2024 - spotlighting the signs and symptoms of axial spondyloarthritis (axSpA): How ��ֳ� works with the axSpA community

Vandenbruaene Nathalie — Fri, 03 May 2024 12:12:03 +0000

Zsófia Bakonyi, Patient Strategy Rheumatology

Vandenbruaene … Fri 03/05/2024 - 14:12

On World AS Day 2024, ��ֳ� reaffirms its commitment to supporting people living with axial spondyloarthritis (axSpA). This year's theme, "Signs and Symptoms", highlights the importance of early recognition and diagnosis, to positively impact the lives of those affected by this chronic inflammatory disease through effective collaborations.

We are proud to work with organizations like the Axial Spondyloarthritis International Federation (ASIF) to raise awareness of AS to educate and engage patients and to support rheumatologists through medical education initiatives. axSpA can be very painful, with a significant, limiting impact on people’s mobility – yet the average time to diagnosis isn’t until seven years after symptom onset. Common symptoms include back pain, fatigue, stiffness worsening after inactivity, and associated conditions like uveitis, psoriasis, and inflammatory bowel disease. Empowering patients to recognize and talk to their healthcare providers (HCPs) about these symptoms may help lead to earlier diagnoses and disease control, helping to prevent irreversible structural damage.

Through research, partnerships, and medical education, ��ֳ� strives to reduce the diagnostic delay for axSpA globally, acting on the findings of ASIF’s global ‘Delay to Diagnosis’ report. We will do this with partners like the UK’s National Axial Spondyloarthritis Society (NASS), through comprehensive public outreach and working with clinicians on axSpA MRI training programs, aiming to achieve their ambition of a ‘Gold Standard’ time to diagnosis of just one year for axSpA by 2025.

We are addressing other gaps in the rheumatology patient journey by supporting physicians through digital health platforms. In our FASTRAX program, we use new technologies to educate healthcare providers, with ambitions to reduce instances of primary care physicians not recognizing inflammatory pain; to prevent people living with axSpA from being lost through incorrect assessment and triage; and to improve access to expert rheumatology care.

Our Europe-wide Rheumacensus program is leading the way in elevating the standard of care for patients with axSpA by highlighting unmet care needs. We collaborate with HCPs, payors and patients themselves to gain a holistic view of the situation in rheumatology care and have reached consensus on areas requiring improvement. The results from this program have recently been published in Rheumatology and Therapy, laying a framework for rheumatologists to make real, positive changes in their clinics.

For HCPs specifically, we work with clinical experts to create a wealth of medical education resources like RheuMuseum, to support awareness of the clinical manifestations of axSpA among US HCPs, and the ��ֳ� Med Hub, a specialized platform that makes it easy for HCPs to stay aware of the latest advancements in immunology and find ready-to-use resources for their day-to-day practice.

On World AS Day and every day, ��ֳ� remains dedicated to serving the axSpA community through pioneering research, raising disease awareness, and amplifying patient voices.

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World AS Day: Enhancing the Patient Experience through Key Collaborations

eCMSadmin — Fri, 07 May 2021 00:00:00 +0000

World AS Day: Enhancing the Patient Experience through Key Collaborations

Evangelia Pateraki, Patient Value Immunology & US Solutions

eCMSadmin Fri 07/05/2021 - 02:00

At ��ֳ�, we pride ourselves on working in a collaborative and transversal spirit across the value chain, both internally and externally to accelerate our solutions to people living with severe diseases. As we approach World AS Day on Saturday, May 8, an annual day dedicated to people with axial spondyloarthritis (axSpA), we want to highlight a few key partnerships that enable us come together in common cause, sharing ideas and working with purpose to make positive change for patients.

axSpA is a chronic, inflammatory disease, predominantly impacting the spine and sacroiliac joints. It can cause chronic inflammatory back pain that does not improve with rest, severe fatigue, restricted mobility, and disturbed sleep. The disease typically starts in late teens to mid-twenties, a critical period in terms of education and beginning a career path. Without early diagnosis, intervention and effective treatment, it can lead to significant disease progression and permanent disability. axSpA affects millions of people around the world and an accurate diagnosis may take 8-10 years from the initial symptom onset. Women often experience even longer delays to diagnosis than men.

In order to address the challenges that patients face in receiving a timely and accurate diagnosis, ��ֳ� has been closely collaborating with several axSpA patient organizations, including NASS (National Axial Spondylarthritis Society) and ASIF (Axial Spondyloarthritis International Federation).

In the UK, we are proud to collaborate in the development and launch of the NASS Gold Standard Time to Diagnosis Project. This is the world’s first initiative to set a Gold Standard for the diagnosis of axSpA. It aims to reduce the average time for diagnosis from eight-and-a-half years in the UK to just one. This ambitious goal would reduce long term burden and be a huge win in the patient’s journey in this disease.

Dale Webb, CEO of NASS recently said, “The average time to diagnosis for axSpA has not improved in the UK despite the development of national clinical guidance and the recognition of the utility of MRI in diagnosis. We are in danger of normalising this situation unless bold and urgent action is taken. No-one should be locked out of life because of diagnostic delay. An earlier diagnosis will enable people to live happy, healthy and productive lives, reduce the risk of complications, and reduce healthcare costs, by allowing them access to effective therapy.”

��ֳ� and ASIF have partnered on the development and international roll-out of Delay to Diagnosis (D2D). Through this program ASIF aims to reduce the average time to diagnosis as well as raise awareness about the disease and detrimental effects of the delay, physically, psychologically and economically. ASIF will do this by collaborating with researchers and community members, creating an axSpA Global Burden Statement, so that health systems can be improved and disparities can be eliminated. The program will build awareness and advocacy tools for use world-wide to reduce the delay to diagnosis for axSpA patients wherever they live. Michael Mallinson from ASIF commented, "Earlier diagnosis and treatment lead to better patient outcomes including remission. This is why this project is so important".

��ֳ� is committed to supporting the axSpA community through purposeful partnerships that empower patients, raise awareness, and improve axSpA patient care and outcomes.

About ASIF (Axial Spondyloarthritis International Federation)
ASIF is a global umbrella organisation established to increase awareness of Axial Spondyloarthritis (axSpA) and related conditions. It aims to disseminate knowledge of the disease around the world to key stakeholders including patients, rheumatologists and other health care professionals, researchers, pharmaceutical organisations, policy makers and the general public.

About NASS (National Axial Spondylarthritis Society)

NASS seeks to transform the diagnosis and care of people living with axial SpA. They campaign policy makers for early diagnosis and better services and work with the NHS to get axial SpA identified and diagnosed quickly. They are determined that everyone receives effective care. They build an active community, making sure people with axial SpA get the latest information and the support they need to tackle living with this condition, online and through local branches across the UK. Axial SpA may work silently. But they don’t.

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World AS Day National Axial Spondylarthritis Society axSpA Axial Spondyloarthritis International Federation

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Axial Spondyloarthritis International Federation

World AS Day 2024 - spotlighting the signs and symptoms of axial spondyloarthritis (axSpA): How ��ֳ� works with the axSpA community

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World AS Day: Enhancing the Patient Experience through Key Collaborations

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World AS Day 2024 - spotlighting the signs and symptoms of axial spondyloarthritis (axSpA): How ������ֳ� works with the axSpA community

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World AS Day: Enhancing the Patient Experience through Key Collaborations

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World AS Day 2024 - spotlighting the signs and symptoms of axial spondyloarthritis (axSpA): How ��ֳ� works with the axSpA community