PRESS-NEWS.org - Press Release Distribution
PRESS RELEASES DISTRIBUTION

Patient organizations: The partner by your side

2025-06-13
(Press-News.org) At the 2025 congress of EULAR – The European Alliance of Associations for Rheumatology – two abstracts were presented that showcase how patient organisations can help to support with education for people with an RMD.   

The first looked at the idea of ‘introduction maps’. To do this, patient experts and healthcare professionals working with ReumaNet in Belgium researched the information needs of new RMD patients. The results suggested a need for high-quality information with one distribution network, that would help to improve accuracy but be easy to update. Taking these points into consideration, the group voted for a set of hand-out maps to be developed that would direct people to new and existing materials on RMD, including brochures, tips for consultations, self-management, and links and contact details for key services and patient organisations. Accordingly, a set of maps was put together for rheumatoid arthritis, spondyloarthritis, juvenile idiopathic arthritis, psoriatic arthritis, systemic lupus erythematosus, systemic sclerosis, vasculitis, myositis, Sjögren’s disease, fibromyalgia, osteoporosis, and RMD in general. In presenting the work, Nele Caeyers described the contents of the maps, and what level of personalisation is possible. For example, personal files can be added so the map can document an individual’s health status across their RMD journey. The project was launched during the Belgian Congress of Rheumatology in September 2024, and over 1,000 maps have already been handed out. The authors note that different language versions will be developed to help further the reach of this project.  

Another example of where patient organisations can offer support is in raising awareness around a particular facet of RMD. In particular, sexual dysfunction is a common but often overlooked issue that can lead to significant emotional distress. A recent study has shown that 67% of patients with RA and 60% with SLE experience sexual dysfunction.1 But there are many barriers to assessing sexual dysfunction in people with an RMD, including time, patient embarrassment, cultural sensitivity, clinician hesitancy, lack of competence, and social taboos. Recognising this gap, the Norwegian Rheumatism Association – in collaboration with a certified sexologist – has created a project to raise awareness and encourage patients to seek help. This uses a combined approach with both digital platforms and community-based strategies focused on awareness campaigns, educational content, and peer support. To date, the Instagram campaign and website article have successfully engaged the target audience, fostering meaningful discussions around sexual health and emphasising the need for reliable and informative content. Articles have also featured in the association’s patient magazine, reaching 30,000 members. Peer supporters within the organisation have expressed strong enthusiasm for the course element, reflecting its relevance and anticipated impact. 

These two pieces of work show how patient organisations can be key in creating easily accessible resources that provide accurate and relevant information tailored to the needs of people with RMDs. 

Source 

Caeyers N, et al. How can we help: Introduction maps for people with a recent RMD diagnosis. Presented at EULAR 2025; OP0123-PARE. Ann Rheum Dis 2025; DOI: 10.1136/annrheumdis-2025-eular.D150. 

Geetha Ravi N, Størseth Moksnes T. Promoting sexual health awareness in Rheumatic Diseases: Educating peers and empowering patients. Presented at EULAR 2025; OP0234-PARE. Ann Rheum Dis 2025; DOI: 10.1136/annrheumdis-2025-eular.D57. 

References 

1. Serna-Peña G, et al. Sexual dysfunction and self-perceived sexual health in patients with rheumatoid arthritis and systemic lupus erythematosus: results from a cross-sectional survey. Rheumatol Int 2024;44(10):2139–45. DOI: 10.1007/s00296-024-05648-8.  

About EULAR 

EULAR is the European umbrella organisation representing scientific societies, health professional associations and organisations for people with rheumatic and musculoskeletal diseases (RMDs). EULAR aims to reduce the impact of RMDs on individuals and society, as well as improve RMD treatments, prevention, and rehabilitation. To this end, EULAR fosters excellence in rheumatology education and research, promotes the translation of research advances into daily care, and advocates for the recognition of the needs of those living with RMDs by EU institutions. 

Contact  

EULAR Communications, communications@eular.org 

Notes to Editors  

EULAR Recommendations 

EULAR School of Rheumatology  

EULAR Press Releases  

 

END


ELSE PRESS RELEASES FROM THIS DATE:

Nurses: A critical role for people with RMD

2025-06-13
New studies shared at the 2025 annual EULAR congress in Barcelona reinforce that position, highlighting the benefits that nurse-led care can bring for both patients and healthcare systems.   Nurse-led care and self-monitoring can both support treat-to-target (T2T) approaches.2,3 Combining self-monitoring with nurse support during the initiation of urate-lowering therapy in people with gout could help reduce physician visits and costs while maintaining or improving quality of care. Work shared by Jeffrey van der Ven looked at estimating the cost-effectiveness ...

Online information for patients needs guidance

2025-06-13
Recommendations stress that communication impacts treatment outcomes and shared decision-making between patients and physicians. Health literacy is an important aspect in this regard, and a person’s understanding of their condition can impact how they are able to use health information.2 There is growing evidence to suggest that internet-based information is an important tool for improving communication with healthcare professionals – and for many patients it plays a central role in their experience.3  New work presented at the 2025 annual EULAR ...

The many ways that AI enters rheumatology

2025-06-13
High-resolution computed tomography (HRCT) is the standard to diagnose and assess progression in interstitial lung disease (ILD), a key feature in systemic sclerosis (SSc). But AI-assisted interpretation has the potential to improve the quantification and characterisation of SSc-ILD, making it a powerful tool for monitoring. Francesca Motta offered new data from an observational study pitting AI-assisted analysis against two radiologists with expertise in thoracic imaging. Results showed that the AI outperformed visual scoring in assessing the progression of fibrosis in patients with SSc-ILD, and showed more significant correlation with values from pulmonary ...

Pregnancy outcomes in autoinflammatory disease

2025-06-13
To address this, a French multi-centre prospective pregnancy observational cohort was set up, to analyse disease activity, treatment, pregnancy outcomes, delivery, and neonatal health. The work – presented at the 2025 annual congress of EULAR – showcased findings from 97 women with an autoinflammatory disease. The most common diagnoses were FMF (81%), followed by undifferentiated systemic autoinflammatory diseases (USAID), tumour necrosis factor receptor-associated periodic syndrome (TRAPS), cryopyrin-associated periodic syndromes (CAPS), Still's disease, recurrent pericarditis, mevalonate kinase deficiency, A20 haploinsufficiency, and other ...

The value of physical activity for people with RMD

2025-06-13
Several sessions at the 2025 annual congress of EULAR, which took place in Barcelona, focused on the value of physical activity for people with a variety of RMD – as well as the potential barriers to implementing these programs in the real world.   Previous trials have demonstrated that long-standing, personalised supervised exercise therapy is more effective than usual care after 1 year in people with severe functional limitations due to rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA).3,4 David Ueckert and colleagues set out to evaluate ...

First data from the EULAR RheumaFacts project

2025-06-13
New work presented at the 2025 congress of EULAR – The European Alliance of Associations for Rheumatology – in Barcelona described RMD health-related indicators from all EULAR member countries, collected as part of the RheumaFacts project – a study identifying potential inequities between countries.  Data were collected on a diverse range of topics, including access to reimbursed physiotherapy and psychological care, the possibility for patients to self-refer to rheumatologists in the public sector, the number of rheumatology departments and rheumatologists, and treatment availability. So far, 31 countries have submitted data.   The ...

Research spotlight: Preventing stalling to improve CAR-T cells’ efficacy against tumors

2025-06-13
Marcela Maus, MD, PhD, director of the Cellular Immunotherapy Program and the Paula J. O'Keeffe Endowed Chair of the Mass General Cancer Center, is senior author and Stefanie Bailey, PhD, Hana Takei, and Giulia Escobar, PhD of the Krantz Family Center for Cancer Research at Massachusetts General Hospital are co-lead authors of a paper published in Science Translational Medicine, “IFN-g-resistant CD28 CAR-T cells demonstrate increased survival, efficacy, and durability in multiple murine ...

c-Fos expression differentially acts in the healthy brain compared with Alzheimer’s disease

2025-06-13
Immediate-early genes (IEGs), including c-Fos, are integral to the brain's response to stimuli. Initially identified as a proto-oncogene, c-Fos is essential for neural activity, synaptic plasticity, and stress responses. While its transient expression supports memory formation in healthy brains, chronic overexpression in AD exacerbates neurotoxicity and cognitive decline. This review synthesizes findings from postmortem studies, animal models, and cell cultures to elucidate the dual roles of c-Fos and its mechanisms in AD pathogenesis. Expression of c-Fos in Brain Regions and Cell Types c-Fos is expressed in specific brain regions such as the hippocampus, amygdala, and cortex, ...

Computed tomography perfusion and angiography for death by neurologic criteria

2025-06-13
About The Study: The observed sensitivity and specificity measures for computed tomography perfusion and computed tomography angiography as an ancillary test for death by neurologic criteria did not meet the prespecified validation threshold of greater than 98%. Clinical examination remains the cornerstone of death by neurologic criteria, and ancillary imaging should be interpreted cautiously within a comprehensive clinical assessment. Corresponding Author: To contact the corresponding author, Michael Chasse, MD, PhD, email michael.chasse@umontreal.ca. To access ...

New tool could help Florida homeowners weather flood risks, lower insurance costs

2025-06-13
With flood risks increasing from extreme weather events like hurricanes and even routine plumbing issues, a team from the University of Florida’s College of Design, Construction and Planning is helping Florida homeowners make smarter choices about building materials and interior finishes that better protect their homes and potentially save on their insurance premiums. Lisa Platt, Ph.D., an assistant professor in the department of interior design and a researcher within the Florida Institute for Built Environment Resilience, or FIBER, and Arezoo Zeinali, a graduate research assistant in Platt’s Design Dynamics ...

LAST 30 PRESS RELEASES:

Intra-arterial tenecteplase for acute stroke after successful endovascular therapy

Study reveals beneficial microbes that can sustain yields in unfertilized fields

Robotic probe quickly measures key properties of new materials

Climate change cuts milk production, even when farmers cool their cows

Frozen, but not sealed: Arctic Ocean remained open to life during ice ages

Some like it cold: Cryorhodopsins

Demystifying gut bacteria with AI

Human wellbeing on a finite planet towards 2100: new study shows humanity at a crossroads

Unlocking the hidden biodiversity of Europe’s villages

Planned hydrogen refuelling stations may lead to millions of euros in yearly losses

Planned C-sections increase the risk of certain childhood cancers

Adults who have survived childhood cancer are at increased risk of severe COVID-19

Drones reveal extreme coral mortality after bleaching

New genetic finding uncovers hidden cause of arsenic resistance in acute promyelocytic leukemia

Native habitats hold the key to the much-loved smashed avocado’s future

Using lightning to make ammonia out of thin air

Machine learning potential-driven insights into pH-dependent CO₂ reduction

Physician associates provide safe care for diagnosed patients when directly supervised by a doctor

How game-play with robots can bring out their human side

Asthma: patient expectations influence the course of the disease

UNM physician tests drug that causes nerve tissue to emit light, enabling faster, safer surgery

New study identifies EMP1 as a key driver of pancreatic cancer progression and poor prognosis

XPR1 identified as a key regulator of ovarian cancer growth through autophagy and immune evasion

Flexible, eco-friendly electronic plastic for wearable tech, sensors

Can the Large Hadron Collider snap string theory?

Stuckeman professor’s new book explores ‘socially sustainable’ architecture

Synthetic DNA nanoparticles for gene therapy

New model to find treatments for an aggressive blood cancer

Special issue of Journal of Intensive Medicine analyzes non-invasive respiratory support

T cells take aim at Chikungunya virus

[Press-News.org] Patient organizations: The partner by your side