Patient Organisations: The Partner by Your Side

Patient Organisations: When receiving a diagnosis of a rheumatic musculoskeletal disease (RMD), people need a lot of information. Some need it all at once, while others may prefer to receive it in smaller portions or like to spread it out. This can mean that rheumatologists and other healthcare professionals do not always know how best to support patient education.

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. AlphaGalileo/SP