Maria Kasimati explained the structure of the board of the Eleana League. It consists of four patients with arthritis and 3 rheumatologists (by the memorandum of the League). The League is led by people with arthritis. The League is funded by membership fees and sponsorship from pharmaceutical companies.
Throughout the year, the organization has organized bazars with the purpose or raising money. Furthermore it published the standards of care for people with rheumatoid arthritis and developed the action plan for the arthritis 2014-17 and provided psychological group therapies.
Maria proposed two topics for further discussion:
1. The lack of access to medication for people living with the disease SLE/Lupus.
Biological drugs are mostly not covered by the insurance and patients therefore cannot afford these. In a number of countries people receive the treatment for free. How many people are effected in Europe?
2. Should the general practitioners have special training in order to support patients and to be able to detect rare disease like lupus?