European Alliance of Associations for Rheumatology
EULAR
The European Alliance of Associations for Rheumatology (EULAR) is the umbrella organization representing national patient organizations, health professionals’ and scientific societies of rheumatology across Europe.
ID: 89158218867-92
Lobbying Activity
Response to Strategy on Intergenerational Fairness
11 Nov 2025
The ageing population of Europe poses major intergenerational fairness challenges. A critical but overlooked driver is the growing burden of Rheumatic and Musculoskeletal Diseases (RMDs) - chronic, disabling conditions affecting over 120 million Europeans. RMDs, often dismissed as a normal part of ageing, affect older adults most and undermine fairness by: a)Reducing employment among older workers and worsening labour shortages. b)Increasing long-term care needs and unpaid care burdens, especially for women. c)Straining healthcare systems, limiting access and sustainability for future generations. Addressing RMDs in the Intergenerational Fairness Strategy is vital to maintain competitiveness, protect health systems, and promote healthy ageing. RMDs - such as arthritis, lupus, osteoporosis, and back pain - are the leading cause of disability in Europe. Their prevalence is rising sharply: rheumatoid arthritis cases are expected to grow by 80% and knee osteoarthritis by 75% by 2050. This will worsen inequalities between and within generations. RMDs cause 60% of workplace health problems and are a leading cause of sick leave, presenteeism, and early retirement. Up to 70% of rheumatoid arthritis patients become work-disabled within 10 years. As prevalence increases with age, many older workers lose the capacity to remain employed - reducing productivity and increasing reliance on welfare. Europe's working-age population will shrink by 12% (20222070), while the ratio of people in the EU that are aged 65 or above compared to the people aged 15-64 is expected to increase from 28% in 2015 to 50% in 2060. Supporting older people with RMDs to stay active is key to solving labour shortages. RMDs are the main driver of informal long-term care in Europe, accounting for 573 Years Lived Caring (YLC) per 100,000 people in 2021, projected to reach 2.3 million YLCs by 2050. Informal care is mostly unpaid - 45% of EU adults provide it, mainly aged 3544, and predominantly women. This reduces labour participation, increases financial strain, and heightens poverty risk. Without action, younger and female workers will bear even greater burdens as Europe ages. RMDs make up 10 to 20% of primary care visits and are the second most common reason for doctor consultations. They also worsen other chronic diseases like heart disease and cancer. As prevalence rises, RMDs will further stretch health budgets, reduce access, and threaten system sustainability. Policy neglect persists because RMDs are wrongly viewed as inevitable with age. Yet many are preventable or treatable, and early care can reduce long-term costs. *Recommendations* To ensure the Intergenerational Fairness Strategy tackles the health, employment, and social dimensions of ageing, the European Commission should: 1. Recognise RMDs as a key intergenerational fairness issue. 2. Develop EU-wide prevention policies on physical activity, ergonomics, obesity, diet, and workplace safety. 3. Promote inclusive, health-adapted workplaces with flexible work, ergonomic adaptations, and early return-to-work support. 4. Include RMD indicators in the Intergenerational Fairness Monitoring Framework. 5. Prioritise RMD research and innovation under Horizon Europe and EU4Health. 6. Improve data collection on RMDs, employment, and economic impacts by age and gender. 7. Acknowledge the link to informal care, particularly for women and younger generations (Set EU standards to recognise unpaid care in pensions and enhance protection and services for informal carers.) Please find attached our full contribution for additional details.
Read full responseResponse to Union prevention, preparedness, and response plan for health crises
29 Oct 2025
Health system resilience is central to EU preparedness for future pandemics. Rheumatology is critical to this resilience due to its expertise in systemic inflammation, immune-mediated pathology, and chronic disease management - all highly relevant to crisis readiness. The Commission should formally recognise and integrate rheumatology within the EUs prevention, preparedness, and response structures. COVID-19 demonstrated the essential role rheumatologists play, yet a chronic workforce shortage threatens this capability. The role of rheumatologists: Rooted in immunology and internal medicine, rheumatology provides understanding of immune dysregulation, multi-organ involvement, and coordinated multidisciplinary care -key for fast-moving, complex threats. During COVID-19, rheumatologists contributed significantly to treatment approaches for hyperinflammation, management of immunosuppressive therapies, vaccination guidance, and support for overwhelmed hospital systems. Their knowledge positions them at the intersection of infectious disease, immunology, and public health, enabling anticipation and management of systemic immune responses common in major health emergencies. Relevance to the Commission Response Plan: Many cross-border health threats are driven by systemic immune-mediated processes rather than isolated organ failure. Rheumatologists, as specialists in such conditions, are well aligned with HERAs focus on major infectious threats with pandemic potential. Leveraging existing rheumatology research and clinical networks would strengthen surveillance, coordination, and resilience - particularly for vulnerable immunocompromised populations. Embedding rheumatology within preparedness planning supports equitable, science-based responses and care continuity. Evidence from COVID-19 As hyper-inflammatory responses emerged as a major driver of severe COVID-19, rheumatologists rapidly assumed leading roles in clinical care across Europe. Their knowledge guided the safe repurposing of immunomodulatory therapies, although this contributed to shortages of key medicines for people with rheumatic diseases. These medicines were later identified by EMA as critical, reinforcing the need for improved monitoring and stockpiling. Rheumatology also delivered rapid evidence generation: multinational data and early European guidance from EULAR informed clinical and vaccination decisions for immunosuppressed patients during high uncertainty. Workforce shortages Despite their importance to crisis response, Europe faces a significant shortage of rheumatologists. In Austria, for example, only 178.5 full-time equivalent rheumatologists were available in 2020 versus an estimated need of 301.8. Limited exposure to rheumatology in medical education and insufficient specialist training uptake contribute to this gap. Addressing shortages is essential to sustain EU health resilience. Policy Recommendations 1. Formal recognition of rheumatology within the Union Prevention, Preparedness and Response Plan and HERA structures. 2. Establishment of a Systemic Immunology Advisory Group under HERA. 3. Inclusion of rheumatology units in EU stress-testing exercises for preparedness. 4. EU guidance to ensure continuity of immunosuppressive therapy and specialist care during crises. 5. Monitoring and safeguarding supply of critical immunomodulatory and anti-inflammatory medicines. 6. Embedding rheumatology expertise in EU research and innovation missions on preparedness. 7. Measures through HERA and EU4Health to address the chronic shortage of rheumatologists.
Read full responseResponse to EU Anti-Poverty Strategy
23 Oct 2025
Rheumatic and Musculoskeletal Diseases (RMDs), affecting over 120 million Europeans, are a major driver of poverty and social exclusion across Europe. They are the leading cause of disability, responsible for 60% of all workplace health problems, 38% of occupational diseases, and over half of all Years Lived with Disabilities (YLDs). The economic and social toll of RMDs prevents millions from working, fuels demand for informal long-term care, and disproportionately harms women, older people, and the socio-economically vulnerable. 1. RMDs and Poverty through Disability and Work Exclusion RMDs, including rheumatoid arthritis, lupus, osteoarthritis, and chronic back pain, often cause chronic pain and mobility loss, leading to long-term unemployment or early retirementup to 70% of rheumatoid arthritis patients become work-disabled within 510 years. People with disabilities in Europe have an employment rate of only 51.3%, compared to 75.3% for the general population. This widening disability employment gap threatens the EUs 2030 targets under the European Pillar of Social Rights (EPSR) to reduce poverty by 15 million and reach 78% employment among adults aged 2064. Workplaces frequently exacerbate RMDs through poor ergonomics, repetitive or physically demanding tasks, stress, and chemical exposure. Discrimination and lack of awareness remain widespreadone in three workers with RMDs never disclose their condition to employers - leading to inadequate accommodations and preventable job loss. Ensuring flexible, adapted work environments is essential to keeping people with RMDs in employment and out of poverty. 2. RMDs and Informal Care Burdens RMDs are the largest cause of physical disability and the main driver of informal long-term care needs in Europe, generating 573 Years Lived Caring (YLC) per 100,000 people in 2021a figure projected to rise by 2050. Most long-term care for RMD patients is unpaid and provided by family, increasing financial hardship, particularly for women, who make up the majority of informal carers. Over 7.7 million women are out of employment due to care responsibilities, further entrenching gender inequality and poverty. 3. Unequal Access to Healthcare and Workforce Participation Barriers to timely diagnosis, rehabilitation, and specialist care worsen disability outcomes and reduce employability. Europe faces a critical shortage of rheumatologistsfor example, Austria had only 178.5 full-time equivalents in 2020, far below the 301.79 needed; Sweden in 2024 had 291 rheumatologists, short by 234. Lack of rheumatology education in medical curricula, combined with gender disparities in diagnosis and treatment (RMDs are three times more common in women), exacerbates inequities and limits workforce participation. 4. Policy Action: How the EU Anti-Poverty Strategy Can Help To achieve the 2030 social targets, the EU must integrate RMD prevention and management into all employment, health, and social policies. EULAR calls for coordinated, ambitious action to break the RMDpoverty link, including: a)Recognising RMDs as a major underlying cause of poverty in EU policy. b)Setting a specific employment target for people with RMDs under the EPSR. c) Ensuring RMDs are prioritised in the Disability Strategy, Quality Jobs Roadmap, EU4Health, and Horizon Europe. d) Strengthening the EU occupational health framework with a dedicated directive on RMD prevention and management, including ergonomic standards and flexible work protections. e) Supporting national RMD strategies and funding through the European Semester. f) Expanding early diagnosis, multidisciplinary care, and lifestyle-based prevention programmes. g) Addressing gender disparities through targeted health initiatives for women with RMDs. h) Reforming medical education to expand rheumatology training and ensure sufficient workforce capacity. For more information, please see attached EULAR's position.
Read full responseMeeting with Annukka Ojala (Cabinet of Executive Vice-President Roxana Mînzatu), Sonia Vila Nunez (Cabinet of Executive Vice-President Roxana Mînzatu)
23 Sept 2025 · Rheumatic and musculoskeletal diseases (RMD)
Response to EU cardiovascular health plan
12 Sept 2025
EULAR welcomes EU efforts to reduce the prevalence and burden of non-communicable diseases (NCDs) through the Healthier Together Initiative, Europes Beating Cancer Plan, and EU Cardiovascular Health Plan. However, we believe that current policy gives insufficient focus to comorbidity: the increased risk of one non-communicable disease causing or exacerbating the development of another potentially more serious condition. The EU Cardiovascular Health Plan represents an important opportunity to close this gap. In particular, it must recognise the impact of Rheumatic and Musculoskeletal Diseases (RMDs) on cardiovascular disease (CVD) prevalence and mortality, as well as the escalating threat posed by Europes RMD crisis. RMDs affect around 120 million Europeans and include over 200 inflammatory and degenerative diseases, from rheumatoid arthritis and lupus to osteoarthritis and back pain. These conditions not only cause pain and disability but also significantly increase the risk of CVD. Inflammatory RMDs raise the likelihood of heart attack, stroke, and premature death through chronic systemic inflammation, which stiffens blood vessels and accelerates cardiovascular aging. People with rheumatoid arthritis face a 50% higher risk of CVD, while lupus patients are up to three times more likely to suffer heart attacks or strokes. Even non-inflammatory conditions such as osteoarthritis and lower back pain contribute indirectly by limiting mobility, a major protective factor for cardiovascular health. With Europes ageing population, rising prevalence of RMDs, and shortages of rheumatologists, these risks are set to intensify. Prevention requires a twofold strategy: addressing shared risk factors such as smoking, obesity, and sedentary lifestyles, and ensuring early detection and treatment of RMDs to limit disability and comorbidity. While rheumatologists are aware of their patients cardiovascular risks, many other medical professionals lack sufficient knowledge about RMDs as a driver of CVD, leading to missed opportunities for prevention. Integrated, multidisciplinary care that links rheumatology, cardiology, and primary care is essential, though health system fragmentation and workforce shortages remain major obstacles. At the same time, patient education and public awareness campaigns are vital, as most people remain unaware of the cardiovascular risks posed by RMDs. EULAR recommends that the Cardiovascular Action Plan place stronger emphasis on comorbidities and explicitly recognise RMDs as a major contributor to CVD. Key priorities should include integrated screening and care pathways, the creation of an EU-wide NCD registry, greater use of health data to support research, and investment in innovation on inflammation and comorbidity mechanisms. Efforts should also focus on strengthening the health workforce, reforming medical education to better reflect rheumatologys role, and addressing high-risk groups such as women and socio-economically vulnerable populations. EULAR is a non-profit organisation which aims to reduce the impact of rheumatic and musculoskeletal diseases (RMDs) on individuals and society and to improve the social position and the quality of life of the millions of people living with RMDs. EULAR represents (1) Europes rheumatologists, researchers and scientific societies, (2) health professionals in rheumatology, and (3) approximately 120 million people living with RMDs through its PARE (People living with Arthritis/Rheumatism in Europe) network.
Read full responseResponse to The new Action Plan on the implementation of the European Pillar of Social Rights
10 Sept 2025
European Alliance of Associations for Rheumatology (EULAR) response to call for evidence on European Pillar of Social Rights new Action Plan EULAR is a non-profit organisation which aims to reduce the impact of Rheumatic and Musculoskeletal Diseases (RMDs) on individuals and society and to improve the social position and the quality of life of the millions of people living with RMDs. Our proposal responds to EVP Roxana Mînzatus comments to the European Parliament in February 2025 in which she highlighted the EUs persistent disability employment gap and social convergence challenges; as well as her commitment to understand and respond to their root causes to create a stronger social Europe. Despite low public awareness, the EU is experiencing an escalating Rheumatic and Musculoskeletal Disease crisis, which is having a disproportionate impact on EU employment, social inclusion, its competitiveness, preparedness and resilience. RMDs are already responsible for over 50% of Years Lived with Disability (YLDs) and 60% of all workplace health problems in Europe. EULAR believes that the 2030 EPSRs targets on employment, poverty reduction and social convergence cannot successfully be met unless the revised Action Plan recognises the disproportionate impact of RMDs on employment, health, women, the socio-economically vulnerable, and the elderly. Additionally, our proposal covers several principles of the EPSR and outlines key recommendations to be carried into the new action plan. Active support to employment (principle 4), including helping people with RMDs to access, maintain and return to work is essential. We call for recognition of the disproportionate contribution of RMDs to years lived with disability and the disability employment gap (principle 17), alongside dedicated targets and programmes to address it. Flexible and ergonomic working conditions, a review of the occupational disease schedule, and recognition of both the RMD related benefits and risks of digitalisation are needed to create healthy, safe and well-adapted work environments (principle 10). To ensure adequate health care (principle 16) the EU must work to promote and protect its cost efficient, multi-disciplinary, outpatient RMD treatment model by addressing Europes chronic shortage of Rheumatologists. The health inequalities faced by women (principle 2) with RMDs must be addressed. Despite RMDs being higher prevalence in women, they face longer delays to diagnosis and treatment. Receiving adequate long-term care (principle 18) is a vital element of secondary prevention against RMD-driven disability and morbidity; and is also crucial to enabling people with RMDs to stay in and return to work. Musculoskeletal disorders create substantial informal care needs across Europe, and by 2050 are expected to become the largest cause of caregiving, resulting in an annual need for 2.3 million Years Lived Caregiving (YLCs). Burden of informal care is disproportionally higher for women, although the gender gap is in a descending trend. Overall, our proposal highlights the importance of the updated EPSR action plan recognising Europes escalating RMD crisis as a leading driver of the EUs disability employment gap and social convergence challenges. Without doing so, EULAR believes it will not be possible for the EU to achieve its 2030 targets.
Read full responseResponse to Gender Equality Strategy 2026-2030
8 Aug 2025
EULAR, the European Alliance of Associations for Rheumatology, welcomes the Gender Equality Strategy, but sees major improvement opportunities from the perspective of addressing the disproportionate burden on women with Rheumatic and Musculoskeletal Diseases (RMDs) . RMDs occur at higher frequency amongst women than men, which has been cited as one potential explanation for the mismatch between their enormous public health and socio-economic impacts and the low awareness and policy prioritisation of these highly disabling and burdensome diseases. Women experience worse health outcomes than men and spend up to 25% more time in poor health. It is commonly cited that health inequalities account for a loss of 980bn per year in the EU, with recent studies showing that closing the women's health gap is a $1 trillion opportunity to improve lives and economies. Addressing RMDs will contribute significantly to this as they affect over 120 million Europeans, disproportionately women, and the total cost of work-related RMDs is as high as 2% of the Gross national product in the EU. However, it is also important to emphasise that the high frequency and disproportionate impacts of RMDs on women significantly impede principles (3) Equal pay and economic empowerment, (4) Worklife balance and care, (5) Equal employment and adequate working conditions (6) Quality and inclusive education. The enormous burden of RMDs on Europe is deeply concerning, and their disproportionate impact on women more so in the context of the Gender Equality Strategy. In light of this, EULAR submits the following recommendations for the Gender Equality Strategy: 1. Support further socio-economic research to assess the impact of Europes escalating RMD crisis on Gender Rights and social inclusion, including an update of the EU MUSC project. 2. Include a section of the strategy dedicated to promoting and improving womens health, as aligned with principle 2 from the Roadmap for Womens Rights. 3. Embed gender mainstreaming into all EU health policies, expanding actions already in place from the Gender Equality Strategy 2020-2025. 4. Actively address non-communicable diseases such as mental health, cardiovascular disease, autoimmune conditions, and osteoporosis and rheumatoid arthritis, which disproportionately affect women in a gender-specific health strategy. 5. Encourage Member States to adopt early screening programmes for RMDs (jointly with other key NCDs) for women, referral pathways that account for gender disparities in symptom presentation, and ensure medical education and recruitment of healthcare professionals includes gender sensitive training and considers the disproportionate impact of certain diseases, including RMDs, on women. 6. Encourage Member States to adopt and invest in multidisciplinary care models for diseases disproportionately impact women, including RMDs, and to address the gender care gap by investing in high-quality care. 7. Actively support those providing care by addressing the impact of RMDs on the health and care workforce. 8. Require the collection of gender-disaggregated data in all public health initiatives the EU funds in relation to specific disease areas to strengthen the evidence base for gender-appropriate interventions. 9. Support and strengthen the inclusion of women in clinical trials, from the beginning of the process to the final trial itself. 10. Establish indicators to track progress on equitable care for women with RMDs as part of European Semester and Health in All Policies approaches. 11. Require all future EU health research programmes to provide sex, gender and age specific data disaggregation as a funding criterion. 12. Increased research under programmes such as Horizon Europe and the future FP 10 programme into RMDs disproportionately affecting women is essential to better understand these diseases, and enable the development of better prevention, diagnosis and treatment options.
Read full responseResponse to Quality Jobs Roadmap
28 Jul 2025
The Quality Jobs Roadmap is a key opportunity for the EU to affirm that employment must not come at the expense of health. Rheumatic and Musculoskeletal Diseases (RMDs), affecting over 120 million Europeans, are a growing but under-recognised threat to the EU workforce, competitiveness, and the green and digital transitions. RMDs are the leading cause of sick leave and work-related disability, responsible for 38% of occupational diseases and 60% of workplace health problems, costing up to 2% of EU GDP. Yet they remain largely absent from EU employment, health, and social policy frameworks. Only 51.3% of people with disabilities are employed, and the gap is growing. Many people with RMDs experience chronic pain and fluctuating symptoms but lack workplace flexibility or support. Fear of stigma discourages disclosure, leading to exclusion and job loss - especially for women, older workers, and the socio-economically vulnerable. Digitalisation and AI offer support tools, but also introduce risks: increased sedentary work, repetitive strain, isolation, and mental stress, all of which can aggravate RMDs if unaddressed. RMDs also drive health workforce shortages, causing early retirement and rising care demands. They limit mobility, worsen comorbidities, and reduce employability across sectors. Despite calls from the European Parliament for a dedicated RMD Directive, EU action remains insufficient. The Quality Jobs Roadmap must address this gap to support inclusion, productivity, and sustainable health systems. EULAR Policy recommendations: 1. Acknowledge the importance of preventing and managing Europes escalating RMD crisis to its Quality Jobs agenda, workforce shortages, and European competitiveness. 2. Recognise the scale of RMD-driven disability and the need for the proposed new actions under the EUs 2021 2030 disability strategy and disability and employment package. 3. Commit to a dedicated research project (through ESF+) including modelling, monitoring and forecasting of the impact of Europes escalating RMD crisis on the EUs workforce, quality jobs agenda and competitiveness. 4. Commit to research and monitoring of the impact of the digital transition on the changing workplace and resulting risks and opportunities for the prevention and management of RMDs. Introduction of legislative and policy measures to mitigate identified risks. 5. Propose an EU-backed certification scheme for quality jobs for people with RMDs underpinned by a standardisation exercise. 6. Better resourced and more impactful EU OSHA campaigns to raise awareness amongst EU employers and employees of the management of RMDs 7. Accept the European Disability Forums recommendation to launch an EU Disability Employment and Skills Guarantee, including a specific programme for people living with RMDs. 8. Conduct a comprehensive review of the current occupational health legislative framework to ensure that its properly aligned with the Quality Jobs agenda. 9. Commit to a review of the European Occupational Disease Schedule to ensure that all musculoskeletal disorders that are induced or aggravated by work and the circumstances of its performance are recognised. 10. Commit to developing EU guidance and recommendations for Member States and companies on adopting national strategies on RMDs and work. 11. Highlight the need for further actions through the European Semester process to promote and develop comprehensive national RMD strategies to address the challenges of social convergence, workforce shortages, competitiveness, and the sustainability of EU health systems. 12. As the current legislative framework is fragmented and outdated the European Parliament has consistently called for a comprehensive RMD Directive for the prevention and management of RMDs in the workplace. Please find a more detailed analysis within the attached document.
Read full responseMeeting with Alicia Homs Ginel (Member of the European Parliament)
16 Jul 2025 · Impacto de los trastornos musculoesqueléticos en empleos feminizados
Response to Evaluation of the European Centre for Disease Prevention and Control
12 May 2025
The Regulation to revise the ECDC mandate recognises, the impact which a serious outbreak of a communicable disease can have on the prevention and treatment of non-communicable diseases and comorbidities needs to be considered. It also commits that, the first evaluation shall examine the feasibility of extending the mandate of the Centre to address the impact of cross-border threats to health on non-communicable diseases. Whilst this is not explicitly recognised in the call for evaluation it is important that it does so. COVID-19 pandemic confirmed (see below) how interconnected disease areas are and that the optimal path to communicable disease control requires consideration of NCDs, and the need for a more integrated approach to health challenges and threats. Extending the Centres capacity to operate in this area is therefore essential. This includes the need to support data collection efforts in other areas and linking databases across sectors, to increase sustainability and efficiency of EU-level activities. This will improve population health through co-ordinated and scientifically informed disease prevention, reducing susceptibility to future infectious outbreaks and other health threats. The relationships between communicable diseases, NCDs and their co-morbidities is complex. Rather than looking at healthcare through the lens of individual diseases or organs, more research should be focused on identifying and understanding these relationships with a view to developing new and more effective prevention strategies and treatments. The European Parliament, for example, has called for more research on chronic inflammation, and the ECDC can play an important role in prioritising EU-related research in this area. Rheumatic and Musculoskeletal Diseases (RMDs) are a group of over 200 conditions, some of which are degenerative diseases of the musculoskeletal or locomotor system (e.g., osteoarthritis and osteoporosis), while others are inflammatory or systemic immune-mediated diseases (e.g. rheumatoid arthritis and scleroderma). They affect over 120 million Europeans, and are linked to comorbidities, e.g., cancer, cardiovascular disease, diabetes, and mental health. The pandemic experience of people with RMDs illustrates the importance of the ECDA addressing the relationship between communicable and NCDs. These include: - Increased susceptibility to the disease: people with RMDs have a higher risk of SARS-CoV-2 infection and mortality than the general population, as well as poor outcomes of COVID-19 associated with the burden of comorbidities in this group. - Deteriorating health: research to assess the impact of the COVID-19 pandemic on patients with RMDs confirmed that their health worsened during lockdown. - Drug shortages: the use of RMD drugs for the treatment of COVID-19 led to a shortage of essential anti-inflammatory drugs used in the treatment of arthritis, vasculitis, and other inflammatory RMDs. - Shortage of rheumatologists: rheumatologists were heavily involved with hospital COVID teams. This made the pre-existing shortage of rheumatologists more acute and compounded the challenges faced by patients in accessing treatment. The result was a deterioration in the quality of treatment provided, a significant backlog, and a worsening of disease outcomes for people with RMDs. - Continuing immunosuppressive medication: people with inflammatory RMDs that take high doses of steroids and immunosuppressants are at higher risk from COVID-19. This led to significant concerns about whether they should continue with their treatments. EULAR is the European umbrella organisation representing scientific societies, health professional associations and organisations for people with RMDs. Sources and additional information can provided on request to EULAR Advocacy: publicaffairs@eular.org
Read full responseMeeting with Sirpa Pietikäinen (Member of the European Parliament)
25 Feb 2025 · Rheumatology
Meeting with Adam Jarubas (Member of the European Parliament, Committee chair)
7 Feb 2025 · Europe’s escalating rheumatic and musculoskeletal diseases (RMD) crisis
Meeting with András Tivadar Kulja (Member of the European Parliament)
16 Oct 2024 · Arthritis/rheumatism in Europe
Meeting with Michalis Hadjipantela (Member of the European Parliament)
16 Oct 2024 · Escalating RMD crisis
Meeting with Tilly Metz (Member of the European Parliament)
28 May 2024 · EULAR manifesto
Response to A comprehensive approach to mental health
13 Feb 2023
The European Alliance of Associations for Rheumatology (EULAR) would like to highlight the causal relationship between mental health and Rheumatic and Musculoskeletal Diseases (RMDs) and the need for more research into the relationship between RMDs, inflammation, and mental health, and the introduction of flexible work practices to reduce the mental health risks faced by people with RMDs. This is particularly important because the mental health burden of RMDs will increase as Europes population ages. RMDs which affect over 120 million Europeans - have a significant and direct effect on mental health. Clinical anxiety and clinical depression in rheumatic diseases has about twice the prevalence seen in the general population. RMDs are long-term, chronic conditions that can affect people at any age, and they worsen over time. They include degenerative diseases of the musculoskeletal or locomotor system (e.g. osteoarthritis and osteoporosis), while others are inflammatory or systemic immune-mediated diseases (e.g. rheumatoid arthritis and scleroderma). They can result in significant disabilities, including irreversible damage to joints, tissues, and organs, chronic pain, as well as a decreased life expectancy. Symptoms such as chronic pain, fatigue, and disability, as well as indirect impacts of RMDs, including the loss-of-independence, loss of work and lower self-esteem, often result in increased rates of depression and other mental health disorders. However, the biochemical links between RMDs, inflammation, and mental health are less obvious. There is growing evidence that biochemical mechanisms that cause RMDs can cause mental health disorders. RMD-induced inflammation in one tissue can result in inflammation in other, apparently unrelated, tissues or organs in the body, including the brain. Part of the explanation for this phenomenon is that, whilst these tissues and organs can be very similar at the cellular level. It is now believed that inflammation in the brain, triggered by RMDs, can contribute to mental health disorders, including depression. Exposure to stress can also be a trigger for RMDs. Epidemiological studies show that stress in childhood, for example, can lead to greater instances of RMDs and other chronic diseases. To explain: the hormone cortisol is part of the stress response. However, it is thought that cortisol is one element / ingredient of a biochemical culture within the body that can result in uncontrolled inflammation. Stress in the workplace is also associated with flare-ups in inflammatory RMDs. RMDs account for around 60% of all workplace health problems and are the largest cause of sick leave and premature retirement due to physical disability in Europe. Some RMDs are associated with specific mental health conditions. For example, lupus patients are more likely to suffer from depression and psychosis (suicide rates are comparatively high); spondylitis also often leads to suicide, mainly in men; people with Behcets syndrome can experience psychosis. EULAR therefore calls upon the European Commission to recognise the quality of life and biochemical links between RMDs and mental health in its upcoming Communication. More specifically, EULAR calls on the Commission to address this issue through greater research funding into (a) the links between RMDs, inflammation, and mental health disorders, and (b) best medical practices for reducing the impact of RMDs, stress and mental health disorders on one another. EULAR also calls for the Commission to highlight the workplace challenges faced by people with RMDs and other chronic diseases as being a major source of stress and mental health issues. Traditional rigid ways of working are simply not compatible with the mental health of many people with chronic diseases. This is why EULAR is calling for legislative and non-legislative measures to promote flexible work practices for people with RMDs and other chronic non-communicable diseases.
Read full responseResponse to European Disability Card
9 Jan 2023
While not every instance of a Rheumatic and Musculoskeletal Diseases (RMDs) results in disability, RMDs comprise the largest cause of physical disability in the EU and account for over 50% percent of Years Lived with Disabilities (YLDs) in Europe. Unfortunately, people do not associate RMDs with disability because the cause of disability is often invisible. A common EU definition, one that properly recognises RMD-driven disability across EU Member States is therefore vital in ensuring their rights are properly recognised by a European Disability Card. Whilst any measures to increase access to leisure, social, and cultural activities are beneficial, for people with RMDs, the most important measures the Disability Card can support are practical in nature, including the ability to skip airport queues, mobility discounts, and free parking. RMDs are among the worlds most prevalent, disabling, and burdensome non-communicable diseases, affecting over 120 million Europeans. RMDs comprise over 200 conditions, some of which are degenerative diseases of the musculoskeletal system, like osteoarthritis, while others are inflammatory (or immune systemic-mediated) diseases, like rheumatoid arthritis and scleroderma. RMDs are long-term, chronic conditions that worsen over time. Symptoms may include persistent joint pain, tenderness, inflammation indicated by joint swelling, stiffness, joint deformity, loss of range of motion or flexibility in a joint, extreme fatigue, lack of energy, weakness, and a feeling of malaise. Inflammatory RMDs flare up and subside, meaning they can be highly disabling at certain intervals (for life), but do not necessarily have the same severity of impact every day. This variability effects both perception and measurement of the disabling impact of RMDs. It is therefore hard to measure disability of e.g. arm movement as this may not always be visible / present. Disability is often associated with wheelchairs, amputation, etc. Significant advances in anti-inflammatory and immunosuppressant drugs over the last two decades have dramatically reduced the number of people living with RMDs that require wheelchairs and operations. However, these advances have reduced, not removed their disability. People living with disabilities resulting from RMDs feel that their disability is not properly recognised and that they do not receive the support that they require. Furthermore, people with RMD-driven disabilities also face a range of challenges related to accessing health and social security services, as well as workplace participation. People with RMDs that have recognised disability status will be able to better exercise their rights and ensure their rights are recognised in other EU countries if they move or travel. This is important for social rights, inclusion, employability, and health security. Unexpected RMD flare-ups can be caused by disease activity as well as work-related stress and other psychosocial risks. This creates the need to rest for a period of time and requires access to professional medical care at short notice, as well as the need to work remotely, often from home. Recognition of RMD-driven disability will help support the need for the provision of flexible work schedules by employers, a difficulty that many people with RMDs experience in being able to stay in and return to work. The European Parliament (Towards equal rights for persons with disabilities) recently recognised that the: lack of a common EU definition of disability constitutes a major obstacle to the codification of disability assessment and the mutual recognition of national decisions on disability issues, in particular of eligibility for access to specific facilities and services in the field of social security. 1. According to the WHO Rehabilitation Need Estimator available at https://vizhub.healthdata.org/rehabilitation/ fixed at European region and All conditions categories. Accessed April 4th, 2022
Read full responseMeeting with Karolina Herbout-Borczak (Cabinet of Commissioner Stella Kyriakides)
12 Jan 2021 · Presentation of EULAR and exchange of views on the challenges of people and patients with RMDs in the context of the Pharmaceutical Strategy
Meeting with Joost Korte (Director-General Employment, Social Affairs and Inclusion)
15 Oct 2020 · Rheumatic Muskuloskeletal Diseases, occupational health and safety
Response to Pharmaceutical Strategy - Timely patient access to affordable medicines
7 Jul 2020
EULAR welcomes the initiative of the European Commission to modernise and update the existing regulatory framework for pharmaceutical products in the European Union.
EULAR believes that the planned overhaul of the EU’s approach to pharmaceutical comes at a good moment in time: 20 years after key components of EU pharmaceutical law were adopted, new challenges have arisen and are calling for new responses. Among these are
• Medicines shortages linked for instance to market mechanisms, commercial strategies, crisis demand or dependence on third country production – with almost all of these factors being highlighted in the COVID-19 crisis;
• Persistent, if not increasing, inequalities in access to medicinal products, with a growing number of products not available to patients and hospitals in some European countries;
• New product categories which combine for instance elements of a traditional medicinal product with those of medical devices or digital applications.
• The need for innovation in all parts of Europe’s health systems (products, services and organisation of care)
EULAR calls on the European Commission, the other European institutions and the Member States to improve access to affordable pharmaceuticals by
Modernising the legislative and non-legislative frameworks governing pharmaceuticals at EU level to make them fit for the challenges of the 2020s;
Enhancing collaboration at EU level as well as between national authorities to guarantee full and timely access to quality products in all parts of Europe;
Opting for common European approaches wherever possible, including for instance market authorisations for products on the borderlines of traditional pharmaceuticals, such as products combining a pharmaceutical and a medtech component or a digital application.
EULAR would furthermore like to emphasize a number of issues mentioned in the European Commission’s roadmap document:
1 Any pharmaceuticals strategy should put the patient in the first place. It is therefore important to give aspects such as patient safety or needs-orientation priority over economic considerations such as the viability of business models in the pharmaceutical industry.
2 The development of a new policy on pharmaceuticals must take place in a fully inclusive manner, with patients’, doctors’ and health professionals’ systematic involvement in all phases of decision-making.
3 Innovation is key when it comes to offer optimal treatment options to European citizens. European researchers, especially in non-commercial environments, need strong public support and funding to perform their tasks with success. The independence of non-commercial research needs protection beyond the core scope of pharmaceuticals legislation. The conditions for innovation to take place in Europe need to be improved in all stages of the innovation cycle, from basic research to translation of research into new products and applications.
4 Scientific evidence must be at the center of European and national decision-making related to the accessibility of products (e.g. decisions on market authorisations, HTAs and other cost-benefit evaluations, reimbursement). Scientific advice should also be central in defining therapeutic offers to patients in the different national health systems (e.g. decisions on the use of generics and biosimilars or decisions on whether pharmaceuticals or alternative treatment options are preferable).
5 Inequalities, especially between European countries and regions, deserve stronger attention by policy-makers. In too many cases, innovative (or even well-established) products are not available to all citizens. The European Commission should analyse systematically the reasons and propose concrete solutions.
6 Particular attention should go to sectors which have often been neglected by commercial product development, such as children (pediatric medicine) or rare/orphan diseases. In such areas, European Union action can be of particular added value.
Read full responseMeeting with Inge Bernaerts (Cabinet of Commissioner Marianne Thyssen)
29 Nov 2016 · Health and Safety at work
Meeting with Vytenis Andriukaitis (Commissioner) and
13 Oct 2016 · Prevention and diagnosis of rheumatic diseases, co-operation EULAR - Commission