Rare diseases WE CARE

The objectives of this working group include:

–  encouraging cooperation: between members themselves, between the different disciplines involved, with patients and patient organisations and between the different levels of health care

– to map expertise in the various rare rheumatic diseases

– being a central point of contact and a representative of the specific expertise and scientific research in the field of rare rheumatic diseases

– in cooperation with the European and regional initiatives (respectively the European reference networks, especially ERN ReCONNET and RITA, and the Flemish rare diseases network), optimise diagnostic and therapeutic decisions in patients with rare diseases; improve the quality of care, including developing patient care pathways; adapt and integrate scientific guidelines according to the national and local situation.

WE CARE

An important initiative of the working group is WE CARE (WEekly Complex And Rare diseases Exchange platform): a biweekly online consultation platform for short, low-threshold, practical discussion of diagnostic or therapeutic problems. More complex case discussions are forwarded for discussion within the Flemish rare diseases network (multidisciplinary consultation system sclerosis) and/or the CPMS programme of the European reference networks (Clinical Patient Management System).

The rare diseases working group focuses primarily on the following conditions:
– idiopathic inflammatory myopathies / myositis
– systemic sclerosis
– Systemic lupus erythematosus
– vasculitis
– juvenile idiopathic arthritis
– auto-inflammatory diseases
– metabolic and genetic bone disorders 

Link to our bi-weekly meetings:
– every other Friday from 5:00 PM to 6:00 PM effective Fri 1st March 24 
– every other Wednesday from 9:00 AM to 10:00 AM effective Wed 6th March 24

Link to our application form.