The Newsletter of LUPUS EUROPE 25- 07- 2009


The Newsletter of LUPUS EUROPE JULY-2009

Dear Friends,

We hope you are all enjoying a wonderful Summer time. Time is passing fast and August is already knocking at the door. Soon it will be September. Our Annual Convention is only a few weeks ahead. We hope to see many of you in Strasbourg, France on the 9th of September.
It has already been more than a month since our last big event. EULAR 2009 in Copenhagen, Denmark, has been a great success for LUPUS EUROPE. In this Newsflash you can read all about our actions during this great European rheumatology event.
Other initiatives and interesting news makes this fourth Newsflash complete.

We wish you pleasant reading.
Trustees of LUPUS EUROPE

*** EULAR 2009, Copenhagen, Denmark ***

Trustee Meetings
The Board of Trustees met on Wednesday 10th of June in Copenhagen and continued their Meeting on Saturday 13th of June. Minutes of the Meetings are being distributed.

LUPUS EUROPE Stand at EULAR congress
For the first time ever, LUPUS EUROPE had a stand at the EULAR congress together with Lupus DK. It offered many opportunities to raise awareness among doctors, health professionals and other patients. Banners were made to attract people to our stand. Leaflets were handed out to spread our message around Europe and further. Lupus France had been so kind to send some presentation material and we had samples of sun protection hats from Colibar to show. The Trustees were there most of the time to inform interested visitors about our cause. The LUPUS EUROPE T-shirts drew attention too! A lot of people stopped at the stand, asking for more information. We also had visits from our members, where both Marianne Rivière and Fatima Lavoll stopped by often. We even had greetings from other members through their EULAR delegate, which was nice and thank you. Lupus DK had planned for this event during this past year and were able to have 10 members from the all over the country to participate through sponsorships by the national rheumatologist society. That was a fantastic experience and has boosted the national group tremendously. The stand was very successful. It is the aim of LUPUS EUROPE to repeat this initiative next year at the 2010 conference in Rome.

Meeting with PARE
PARE, People with Arthritis/Rheumatism in Europe, represents the patients within EULAR. Many national leagues from all over Europe are member of PARE, making it a very strong organisation. For LUPUS EUROPE, the expertise and knowledge of PARE could be of much help. On the other hand, the network of LUPUS EUROPE could offer PARE more insight in different topics. It would therefore be useful to collaborate. During a meeting with some PARE board members, the Trustees exchanged information and asked if LUPUS EUROPE could be participating in PARE activities. As LUPUS EUROPE is not a national organisation and covering only one rheumatic condition (SLE), we cannot be full members with voting rights. However, we will be fully informed about future PARE projects and will be invited to their activities and conferences. This alliance offers us as well as PARE great opportunities. We will keep you informed on any progress.

If you want to know more about PARE and its activities, please contact Nele at

Satellite Symposium - Lupus – Considering the Future
On Friday, 12th of June LUPUS EUROPE organised a Satellite Symposium together with and by the support of UCB. Professor David Isenberg (UK) chaired the session and gave a talk on Patient Empowerment and how the input of patients can be valuable to physicians in the management of lupus. Doctor Michelle Petri (USA) gave the attendants an insight into the latest approaches used in lupus management and an update on clinical trials. Next, Kirsten Lerstrøm (Denmark) expressed the visions of a lupus patient. It was most valuable to hear the other side of the story too. Professor Schneider (Germany), Medical Advisor of LUPUS EUROPE, explained the multi disciplinary approach of lupus management. A question and answer session closed the interesting meeting.
A full report will be distributed among our members.
A big thank you to the people from UCB and the speakers for their great input in this symposium.

If you want to know more about this Satellite Symposium, please contact Rudi Hocks at or Kirsten Lerstrøm at

*** Code of Practice between Patient Organisations and the Healthcare Industry ***
The EUROPEAN MEDICINES AGENCY (EMEA) PATIENT AND CONSUMER WORKING PARTY (PCWP) working group of patient organisations has developed a Code of Practice between Patient Organisations and the Healthcare Industry. All patient groups are invited to adopt and sign up for the Code that is intended for guidance on relations between patient organisations and industry. LUPUS EUROPE has decided to support this Code and has signed up the Code of Practise on 28th June 2009. The document does not attempt to be exhaustive, but identifies some challenges and solutions based on experiences, and defines a set of basic principles and recommendations. As LUPUS EUROPE is working with industrial stakeholders as well, the Code will be of use in the future.

If you want more information on this subject, please contact Rudi Hocks at or visit or the following link to the pdf file: Code of Practice between Patient Organisations and the Healthcare Industry.

*** Successful Trial! ***
First Potential Lupus-Specific Treatment in Sight
BENLYSTA™ Successful in First of Two Pivotal Clinical Trials
On July 20th, Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) announced positive results from a year-long clinical trial of BENLYSTA for treating lupus. When the 52-week study concluded, the lupus patients who were treated with BENLYSTA had improvement in overall disease activity without clinically significant flare-ups in one or more isolated organs when compared to patients who received the placebo (inactive agent). The patients receiving BENLYSTA also were able to reduce their intake of steroid medications. The study is the largest ever to be completed for lupus and the first Phase III (late stage) trial of a new biologic immune therapy for lupus to succeed in meeting its primary endpoint and most of its secondary endpoints.
Source: Newsletter of Lupus Foundation of America Inc. dated 20th July 2009

*** Caring and Sharing ***
CARING AND SHARING, LUPUS EUROPE’s magazine, will be published by the middle of December 2009. National Groups who have material in the form of articles/notices/photographs for this year's edition are urged to send them to the Editor at by the middle of October 2009.

25th July 2009
Nele Caeyers