ManifestoDutch people with rheumatic and musculoskeletal diseases are not appropriately represented in the EULAR PARE organisation. Currently only 5% of the members of arthritis patient organisations have a voice in the EULAR PARE. The remaining 95% does not. This is a great shortcoming and this needs to change.

Members of the SRPN and local arthritis patient organisations

All national arthritis patient organisations in the Netherlands are united in the Network of Arthritis Patient Organisations in the Netherlands (SRPN). With the exception of one, ReumaZorg Nederland (RZN), which currently occupies the seat in EULAR PARE. Of the 68 local arthritis patient organisations 63 endorse this Manifesto and have given the Dutch Arthritis Society (ReumaNederland) a mandate to represent them in the SRPN.

Under the current rules, the SRPN cannot become a member of EULAR PARE because the seat is occupied by RZN which represents a few local arthritis patient organisations in the Netherlands. This means that EULAR PARE is in the current situation lacking the support of nearly all patients and their organisations in the Netherlands.

This Manifesto calls attention to the fact that SRPN should be a member of EULAR PARE. The knowledge provided by EULAR PARE is currently being withheld from the

largest group of people with rheumatic and musculoskeletal diseases in the Netherlands. Conversely, it is a missed opportunity that the knowledge and expertise of most of the Dutch arthritis patient organisations cannot be shared with EULAR PARE.

This Manifesto is also endorsed by two professional associations, the Dutch Association of Rheumatism Nurses (V&VN) and the Netherlands Health Professionals in Rheumatology (NHPR). The Dutch Society for Rheumatology (NVR) was also consulted, and has the opinion that the largest patient organisation should be the member of EULAR PARE.

On behalf of their membership, the signatories of this Manifesto ask EULAR PARE to take the necessary steps to admit SRPN as a member of EULAR PARE to represent people with RMD’s in the Netherlands.

R

Reuma Patienten Vereniging Tilburg e.o.

Alkmaar e.o.Reuma

PatiëntenVerenigingVeghel-Uden e.o.