In order to make sure that Lupus Europe was present at two very important platforms for patient organisations, I accepted the invitation to attend IAPO’s congress in
London and the EPF AGM in Brussels. I feel both of these are very important for Lupus Europe and it was an honour to do my best as Lupus Europe’s representative. IAPO and EPF are different but complementary.
In addition to their AGM this year, working groups on Access to Healthcare, Patient Empowerment and the Youth Group plan were initiated at EPF.
As a follow-on and complement to IAPO, I chose to contribute to the Access workshop in order to further explore the issue from another perspective.
What is a patient organisation?
During the AGM the question of what truly constitutes a bona fide “Patient” organization was put to the floor. Certain patient organisations are not what they
first appear to be, with some funded purely by industry and pharma. These organisations are a very real threat to genuine patient organisations as their voice is not truly that of the patients they are supposed to represent. During the AGM members agreed that a
working group should be set up to address the issue. Lupus Europe will participate actively in the working group.