RMD Patient Education & Support
Discover how the latest initiatives from patient organizations are transforming RMD patient education adn support. Tailored “introduction maps” are empowering individuals navigating rheumatic and musculoskeletal diseases (rmds) by offering personalized guidance and a map of their health journey. Learn how awareness campaigns are tackling critical issues, like sexual dysfunction, which affects a importent portion of patients with rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). Peer support networks and digital platforms are fostering open conversations and providing essential information. News Directory 3 reports on the vital role patient organizations play in creating accessible resources. Addressing unmet needs head-on,these organizations are equipping people with RMDs with crucial support. Discover what’s next …
Patient organizations: Supporting RMD patients with education
Patient organizations are increasingly vital in providing support and education for individuals living with rheumatic and musculoskeletal diseases (RMDs). Recent initiatives highlight the impact of tailored resources and awareness campaigns in addressing unmet needs.
One such initiative involves the creation of “introduction maps” designed to guide patients through their RMD journey. These maps cover a range of conditions, including rheumatoid arthritis, spondyloarthritis, juvenile idiopathic arthritis, psoriatic arthritis, systemic lupus erythematosus, systemic sclerosis, vasculitis, myositis, Sjögren’s disease, fibromyalgia, and osteoporosis.
Nele Caeyers presented the maps,emphasizing their potential for personalization,allowing individuals to document their health status throughout their RMD experience. Launched at the Belgian Congress of Rheumatology in September 2024, over 1,000 maps have already been distributed.Plans are underway to develop versions in different languages to broaden the project’s reach.
Another area where patient organizations are making a difference is in raising awareness about often-overlooked aspects of rmds, such as sexual dysfunction.A recent study revealed that 67% of patients with rheumatoid arthritis (RA) and 60% with systemic lupus erythematosus (SLE) experience sexual dysfunction. Barriers to addressing this issue include time constraints, patient embarrassment, cultural sensitivities, and a lack of clinician training.
The Norwegian Rheumatism Association, in collaboration with a certified sexologist, has launched a project to tackle this problem. Their approach combines digital platforms and community-based strategies, focusing on awareness campaigns, educational content, and peer support. The initiative includes an Instagram campaign and website articles, fostering discussions about sexual health and providing reliable information. Articles have also been featured in the association’s patient magazine, reaching 30,000 members. Peer supporters have expressed enthusiasm for the project’s course element, underscoring its relevance and potential impact.
These efforts demonstrate how patient organizations can effectively create accessible resources that deliver accurate and relevant information tailored to the specific needs of individuals with RMDs.
More information:
Caeyers N, et al.How can we help: Introduction maps for people with a recent RMD diagnosis. Presented at EULAR 2025; OP0123-PARE. 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. Two: 10.1136/Annrheumdis-2025-eul.d57