Wednesday, September 2nd 2015
Round Table on Disseminating Key Results from recent Projects and Recommendations
Prior to the official LUPUS EUROPE convention opening, LUPUS EUROPE organized a round table session on, “Dissemination of Key Results from recent Projects and Recommendations”. The reason for staging this event is that we have some important results from studies, international initiatives and newly agreed recommendations which are important to share with people living with the disease in Europe. In all about 25 people attended the meeting with patients from Canada, Europe, Africa and Asia, together with representatives from industry: GSK, UCB and AbbVie. The discussion was lively and we gained valuable input and insight to the importance of sharing results.
Why set targets for lupus treatment? – what was the result of T2T and status on defining what is remission in lupus By Professor Marta Mosca MD PhD, Pisa University, Italy
Professor Marta Mosca presented on how it is possible to set targets for such a complex and complicated disease as lupus. The four overarching principles and 11 specific recommendations received high agreement among the international faculty, yet the question on how to define remission for lupus was the basis for a whole new initiative. Definition Of Remission in SLE (DORIS) was a project launched in 2014 with representation from a wide global lupus specialist group, nephrologist, dermatologist, immunologists, health care professionals and four patients: Cindy Coney from Florida, Petra Bedranova from Slovakia, Bernadette van Leeuw from Belgium and Kirsten Lerstrøm, Chair of LUPUS EUROPE and also patient representative in the T2T project.
EULAR Recommendations for Women’s Health in SLE/APS by Professor Angela Tincani, MD, Brescia General Hospital, and University of Brescia
Professor Angela Tincani led this project, where Francesca Marchiori (IT) and Judith King (UK) represented lupus patients. Professor Tincani gave a thorough presentation of the recommendations: principles and key issues (see notes on this by F Marchiori, Friday’s session).
During the discussion one particular issue, proper counseling by the treating physician on pregnancy was discussed, but this most likely because we had quite a few young women in the audience! A strong indication of the necessity of diffusion of these recommendations.
After the Q&A session, Nuria Zúñiga, LUPUS EUROPE co-opted Trustee for Social Media, went through the different channels of dissemination and the usefulness and effects of each one. She presented about how to make things happen, through discovering her own voice because of lupus. And using this voice as Nuria, we will conquer the world! Together we are stronger, all the while maintaining our own integrity as a person and a group.
For the next steps we received many good ideas and immediate identification of the most easily achieved immediate goals. In particular, we learned that EULAR has decided to have a layman’s version of the EULAR Recommendations made, so we just have to push for having the lupus recommendations made available for the groups as soon as possible.
This was a new way of staging venue, subject and input for an in-depth discussion on key and most relevant issues among lupus stakeholders. Not the last time!