Month: March 2024

 

Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA.  The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with symptoms get an accurate diagnosis with minimal delay and the ongoing support and care they need.   

Webinar, 13 March

To showcase the report and discuss what the evidence and calls to action mean for patients and patient organisations, we are holding a webinar on 13 March (12:00 to 13:30 GMT).  As well as highlighting some of the key results from the report, we will hear clinician and patient organisation perspectives on how IMAS can be used as a tool for change.  Please email Jo Lowe to confirm your attendance. 

Spotlight on IMAS event, 11 June

A celebratory event will take place in Vienna, the evening before the EULAR congress commences. The event, on Tuesday 11 June (18:30-21:30 CET), will bring together our members, industry partners, rheumatologists, HCPs, and other key stakeholders.  It will be an opportunity to celebrate the success of IMAS so far, its transition to ASIF and the patient community; and to share our plans for the future. Please contact Jo Lowe to secure your place.  

 

The Academic Excellence and Recognition Award was presented to Maranda van Dam, Chair of ASASA during the SARAA Congress 2024.

ASASA won a similar award of excellence at the EULAR PARE (People with Arthritis/Rheumatism across Europe) Congress 2022.

The SARAA award was based on significant advances made by ASAS towards improving the quality of life of people living with axSpA in South Africa, as well as training done to build awareness in the medical fraternity around the condition.

Read more about ASASA

The National Association ReumaZorg Nederland is the national Dutch user-led patient organisation, that strives to make a difference in the lives of people with rheumatic and muscular diseases (RMDs).

Having an RMD is a battle against a (lasting) disease, but also against pain, fatigue, loneliness and lack of understanding. Everyday people simply struggle to keep participating: at home, at school and at work.

We work and lobby for an early diagnosis, good healthcare and a healthy active life for people with axSpA. AxSpA mostly affects the spine, causing damage visible on X-ray (ankylosing spondylitis) or damage that doesn’t show up on X-rays (non-radiographic axSpA). Our advocacy aims at supporting people in the best way possible. We want to achieve this together with all people with axSpA and their families, researchers, healthcare providers and other stakeholders who can contribute to this.

As a national patient organisation, RZN is the member of EULAR for PRE for the Netherlands. It is also an associated member of EURORDIS.

Find out more about us at reumazorgnederland.nl