Category: Uncategorized

This year, we want World Arthritis Day (WAD) to be more powerful than ever! To do this we are asking people to share their stories about how they have taken action to live their life to the fullest with a rheumatic and musculoskeletal disease (RMD) in order to provide greater education to people both within the RMD community […]

It is starting! After intense preparation, the second LUPUS EUROPE patient panel is now taking place in Brussels. From Friday to Sunday, nine patients from all over Europe will be discussing the theme of living with lupus, with a specific focus on treatment day after day. Several focus groups and workshops have been scheduled, and […]

What does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016. The survey is aimed at patient representatives: primarily individual patients, their family members or informal carers, and patient organisation representatives across the EU. You do not need in-depth knowledge or experience on quality of care to complete the survey! There […]

In September, during the LUPUS EUROPE convention, we were delighted to welcome Jeanette Andersen to the board. She has written a little introduction for those who don’t already know her from her work in LUPUS EUROPE and Young PARE. “I was diagnosed with SLE in 2011, although I had had symptoms of the disease since […]

A Toolbox of presentations, videos, articles and other resources on patients’ involvement in development of new drugs for treatment was launched on January 27th. The EPF flagship project, EUPATI (the European Patient Academy on Therapeutic Innovation), has lanuched its Toolbox in 7 languages – read more on what fruits this will bring to patients and the research and regulatory […]

  Do you have members in Belgium, the Netherlands, Luxembourg or Germany?  This year’s EPF Regional Advocacy Seminar is open to patient representatives from these countries. Make sure you share this opportunity with them! This year’s Seminar is entitled “Getting the patients’ message across to the national and European level”. Participants will take part in […]

A call from the European Patients’ Forum: In order to gain some more insight on “direct” experiences of patients, EPF would like to get in touch with patients who have accessed treatment across borders (whether under the regulation or the directive), who have tried to access cross-border healthcare, who have tried to find out information […]

The European Lupus Meeting is taking place in Venice, Italy from 5th-9th October 2016. This year will be a great opportunity to share the research work done by patient organisations and/or single or groups of patients. This is a unique opportunity to present our work in the same sessions as the doctors. LUPUS EUROPE invites all […]

The blog has been quiet since our great convention in Vienna and over the holiday period but that doesn’t mean we have been inactive. Here’s a glimpse of some of the past and upcoming activities that LUPUS EUROPE is part of. In addition to those listed there have also been other meetings with sponsors, the new […]

From 25  th – 26  th February there will be a Patient Adherence and Compliance Masterclass held in Amsterdam. For further information please click here. Patient adherence and compliance is an extremely important topic as a very large percentage of patients don’t take their medication as prescribed, leading to problems such as cycles of flares and remission which could otherwise be avoided.