04. 2025
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In this issue you will find:

• Editorial 
• EPIG Reactivation: Strengthening the Voice for RMDs in the European Parliament
• SQEEZE: Putting Patients at the Heart of RA Research and Care
• Experience the EULAR Congress 2025: Learning, Sharing, Networking
• Empowering Youth: New Points to Consider for Transitional Care
• Your Skills Matter: Volunteer with EULAR PARE
• Understanding Rare Autoinflammatory Diseases: A PAED Podcast Episode
• Bubbling to Better Health: LAX VOX for RMDs

• EULAR PARE Editorial Board

Dear Friends,

As thoughts turn towards EULAR Congress 2025 in Barcelona, we catch up on the EULAR Advocacy activities and the EULAR Manifesto and the work of our PRPs with the SQUEEZE Consortium. We’ve a focus on young people with articles on transitions and paediatrics and why not spread the word, we are always looking for volunteers to join our PARE team.  

EPIG Reactivation: Strengthening the Voice for RMDs in the European Parliament
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On 16 October 2024, EULAR Advocacy reactivated the European Parliament Interest Group (EPIG) on rheumatic and musculoskeletal diseases (RMDs), made up of Members of the European Parliament (MEPs) committed to advancing RMD advocacy within the EU.

To celebrate, we held an event at the European Parliament in Brussels, hosted by EPIG co-Chairs MEPs Miriam Lexmann and Alex Agius Saliba, that drew MEPs, advisors, EU stakeholders, and healthcare organisation representatives.

On the EULAR side, Souzi Makri from PARE shared her experience of living with an RMD, and I introduced RMDs from my role as Advocacy Chair, alongside Past Chair Prof. Loreto Carmona. The event reinforced our drive to see RMDs recognised alongside other major non-communicable diseases, like cancer or cardiovascular and mental health conditions.

Since then, the EULAR Advocacy team has prepared for and held the EPIG’s first official meeting on 25 March, discussing goals, organisational structure, and future engagement. Several new MEPs joined, and we’re working with EULAR’s national network to raise awareness of our activities across all member states, beyond the EULAR Manifesto.

SQEEZE: Putting Patients at the Heart of RA Research and Care
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The SQUEEZE project aims to optimise existing Rheumatoid Arthritis (RA) treatments to enhance patient outcomes, making the patient’s perspective essential. From the start, Patient Research Partners (PRPs) have been fully integrated into the research team, shaping the project’s vision and scope at every stage. To achieve its goals, SQUEEZE is conducting three clinical trials: 

• BioTest – Observational trial to identify new biomarkers in synovial fluid and joint tissue, facilitating personalised treatment selection.  
• MethMax – Focused on maximizing the effectiveness of Methotrexate, a cornerstone treatment for RA.  
• RA-DRUM – Investigating the benefits of therapeutic drug monitoring in the use of biological Disease-Modifying Antirheumatic Drugs (DMARDs) to optimise treatment outcomes. 

PRPs play a pivotal role in reviewing study protocols and patient-facing documents, including informed consent forms and trial summaries ensuring they are clear, accessible, and patient-friendly. In the coming months, two major initiatives will further integrate patient perspectives: 

• A recruitment workshop, designed to embed patient insights into trial planning. 
• A communication workshop, equipping patients with strategies for engagement and advocacy. 

The findings from these trials will be instrumental in developing the SQUEEZE Care Model, designed to improve RA management. This model is being co-developed with PRPs, ensuring real-world patient experiences inform its structure and implementation. A PRP from the EULAR network and a local Swiss patient partner are members of the core development team, while the SQUEEZE Patient Advisory Panel and a Patient Advisor specializing in medication adherence review development progress quarterly. By prioritizing collaboration between researchers and patients, SQUEEZE is paving the way for more personalised, effective, and patient-centred RA care. 

This project has received funding from the European Union's Horizon Europe research and innovation programme under grant agreement No. 101095052 and from the Swiss State Secretariat for Education, Research and Innovation (SERI). 

Experience the EULAR Congress 2025: Learning, Sharing, Networking
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Have you ever joined us for the EULAR Congress? If not, now is the time! Join us in Barcelona from Wednesday, 11 June, to Saturday, 14 June 2025, for four days of learning, sharing, and networking. EULAR PARE offers a dedicated programme for people with RMDs and patient organisations.

Don't miss this important event!

PARE Community delegates are invited to the PARE Assembly on Wednesday, 11 June 2025. Please register or contact us at pare@eular.org with any questions.

Empowering Youth: New Points to Consider for Transitional Care
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A recent EULAR Task Force has developed EULAR Points to Consider for patient education in physical activity and self-management of pain during transitional care. These guidelines focus on personalised care, shared decision-making, and interactive learning. Key principles include starting education early, tailoring care to individual needs, offering flexible approaches, and promoting lasting healthy habits. 

You can explore upcoming events and initiatives on the EULAR PARE Events Platform.

Discover more here →

Your Skills Matter: Volunteer with EULAR PARE
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By volunteering with EULAR PARE, you will become part of a dedicated community working to improve the lives of people with RMDs. EULAR PARE volunteers benefit from international networking, teamwork, gaining deeper insights into their own condition, and connecting with like-minded, committed individuals.

Put your skills into practice — for example, join the Young PARE Working Group to take part in meaningful projects that matter to young people with RMDs, contribute to session planning for the PARE Programme at the EULAR Congress, or become part of the Patient Research Partners Working Group.

Take a closer look at what volunteering involves by reading our brochure, explore our 2025 vacancies and get involved!

Apply by 1 June 2025 here  →

Understanding Rare Autoinflammatory Diseases: A PAED Podcast Episode
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Patient representative Tanita-Christina Wilhelmer joined the PAED podcast to discuss "Understanding Rare Autoinflammatory Diseases: From Recurrent Fever to Treatment Access." The episode explores hot topics like early symptoms, diagnostic challenges, genetic testing, treatment options, and barriers to accessing care. 

Listen to the engaging discussion on:

Bubbling to Better Health: LAX VOX for RMDs
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LAX VOX means "free voice" and is a specialised exercise designed to train, treat, repair, or warm up the voice, as well as to promote relaxation. With LAX VOX, you bubble through a silicone tube into a bottle of water. However, it is not just about bubbling — you gently sing "Uuuuus" into the tube, along with other sounds.  

Today, many professionals in the fields of voice and singing, speech therapy, and ear, nose and throat (ENT) medicine use this helpful method. The technique was developed in Finland by a speech therapist who observed her young son blowing bubbles through a straw into a cup of cocoa and subsequently devised this remarkable approach. It has since been further refined and is now widely used across Europe.

Many patients with rheumatic and musculoskeletal diseases (RMDs) experience issues with their voice, breathing, and other related functions. I am familiar with these side effects too, particularly when I have to take high doses of corticosteroids. Due to the limitations affecting the voice, vocal apparatus, and vocal stamina, I had the idea to trial the LAX VOX method with RMD patients.

During several online courses with members of the German scleroderma patient group, we had a great deal of fun practising this unconventional method. Despite its uniqueness, it proved effective, which was incredibly rewarding.

Here is a comment from an enthusiastic participant of one of the online LAX VOX courses:

“I’m Lisa from Germany, and I have been living with scleroderma for many years. My voice is sometimes barely audible, and every lecture becomes a struggle. It was incredible, and everyone could hear the change in the sound of my voice. I felt much more comfortable. In the last online course, around 70 participants joined, and almost everyone discovered something positive for themselves.”

I am confident that this method can serve as an important tool for helping individuals reconnect with their voice, enhance resilience, improve sound production, and refine articulation.