Report: ELEF Convention Mainz, 12. - 16. sept. 2007



ELEF – the federation
Today ELEF - the European Lupus Erythemathosus Federation - has 21 members representing 19 countries and thus about 30.000 registrered Lupus-patients.

The Federation’s finances consist mainly of income from donations, sponsorships by British fundraising activities through Lupus UK and membership payments. The expenses are mostly regarding staging the annual convention, publishing the annual Caring & Sharing, the biannual ELEF Broadsheet and covering travel and accommodation for the meetings of the Board. Balance 2007 is EUR 24.000.

Recent development – demand for action
As you all have been informed about, the past years non-activity was highly critized by some members – especially us from Norway, Holland, Belgium and Denmark. At last year’s convention in Bergen our protests to present state of operation and demand for improvement resulted in a new order of the federation. Observers – as we, the delegates from the four countries, were called – were invited to attend the board meetings in order to clear the problems and encourage a new development within the organization.

We have attended the two board meetings held in Düsseldorf respectively in January and in June/July this year. You should have received reports from these meetings – if not let me know. As a result of these meetings and the board’s interest and willingness to seek new ways, we are confident, that we’ll have the possibility to make noticeable change for ELEF in the years to come.

ELEF European Convention 2007, Mainz

Germany was hosting this year’s convention. The chosen venue was the beautiful old town of Mainz on the river banks of the Rhein and Main. Marvellous setting. We had several very nice sightseeing during our stay.

The history of Lupus organization in Germany was presented in the December 06 issue of Caring & Sharing . In 2006 the German Lupus Self-Help Group Lupus Erythematodes Selbsthilfegemeinschaft e. V. celebrated their 20th anniversary, now with around 3.000 members.

At the convention we met the Chair, Borgi Winkler-Rohlfing, Mainz-local Chair Karsten Lange and Bayern-local Chair Simone Müller-Pretis. For these three representatives, meeting the delegates from the rest of Europe and hear of the different conditions for Lupus patients in Europe, was of great inspiration and new knowledge. The German International Contact (through many years), ELEF Vice-Chair Rudolf Hocks was the host and general planner of the convention.

Regarding the German conditions, I learned several things that we could all benefit from, among others:
• Karsten Lange is the first German Lupus sufferer, who has been diagnosed with the disease due to vaccination (diphtheria) and proven and acknowledged by the German Health Authorities. Now 5-6 others in the country are trying to prove their case within the system on the same ground.

• When Chair Borgi Winkler-Rohlfing turned 50, she asked for donations to a special Lupus Fund instead of gifts. Several more people joined her in this, plus a certain inheritance and focus from the German benefactor to the Lupus Group made it possible to establish their Lupus Fund, which donates a price to a doctor/research noble and with prospective to improve the quality of life for Lupus patients. The price isn’t big, but big enough and with enough zealour to encourage doctors young or old to work for our cause. And as Borgi says, the prize, the publicity and attention in all help create a loyalty to keep on striving to improve our cause all together.

I also noted the positive influence of having dr. Matthias Schneider as ELEF’s medical advisor - him being German and very active on our turf in Germany as well as internationally. The German Lupus Group is lucky to have such a force on their side.

The Program
One could say, that clinical trials and new medications could be the theme of this year’s convention. My notes to the agenda follow this separately, so here I just present an outline.

Wednesday was arrival day with welcoming dinner in the evening.

Thursday was first day of business, where we managed the agenda points 1-9 in a hectic but precise tempo before lunch. The Mayor of Mainz was the first speaker and gave us a warm and interesting talk about “his” town. Then Borgi Winkler-Rohlfing, Chair of the German Lupus Group, welcomed us all. The business according to the agenda, see later. The afternoon was a guided tour around Mainz on foot (and one wheelchair) – amazing history and architecture.

Friday morning allowed only 1½ hour to discuss and decide upon 6 important issues. It went well, however. Then Human Genome Sciences (HGS) presented the company, their research and important new drug – Beluminab – which is in its final stage of clinical trials and supposed to be approved by the Federal Drug Administration of USA. Slides from this presentation attached. A representative from Glaxo Smith Kline (GSK) was also present in order to present their part of the new drug.

After a quick lunch we all – also the people from HGS and GSK went for a boat ride on the Rhein. Wonderful trip, and the afternoon was spent discussing the mornings news and views in this very relaxed setting. Here I found out why we in Denmark are so way behind when using the new medications – our Lupus environment is simply not organized well enough, so that the medical companies will partner with the hospital departments in the necessary research and reporting activities. A center for Lupus could prove to help us here as well as a closer relationship with “our” doctors.

Saturday morning was scheduled to take place at the Mainz University Hospital, Rheumatology Department. Slides from the three speeches will be forwarded later or hopefully soon to be downloaded from the new and improved ELEF Web Site. Brief notes on each speech later. The farewell dinner that night was very nice in a special restaurant in town. But the talks and discussions continued until the early hours.

Sunday was general departure after breakfast. Francesca and I worked a bit on the web site plans.


We all went home confident that ELEF (or soon to be named Lupus Europe) will prove its existence and power of good forces from members on the international Lupus-scene. We have some new good projects to work on, that hopefully will create more attention to our cause internationally as well as nationally.

We could have wished for a better chance to dwell on matters of interest to us all, such as ideas for new activities, keeping members in our groups, distribution of new information among us, clinical trials, etc.
Next year in Spain will hopefully bring more possibilities for this kind of net working activity.

05. October 2007

Hanne Rasmussen and Kirsten Lerstrøm
SLE-gruppe VEST SLE-gruppe ØST/Lupus DK
The Agenda
As you have been informed about, the demands we set forth at last year’s convention, for:

1. More activities to vouch for our involvement and to further the benefit for member organizations
2. A further involvement in European efforts to both pave the way for PR for ELEF as such and also to enhance each of our national efforts to improve our conditions.

- have taken quite some work to push forward.

This year’s convention agenda did not leave much room for discussion or elaboration on urgent matters. Thus a special pre-information was sent out a few days prior to the convention for all delegates to study and take notice of before meeting - in order to make the business possible, so we could make some decisions while gathered. If you haven’t received this, please let me know.

It was Rudi’s wish to make this convention the best prepared convention ever given the extremely short ”business hours” allotted for handling the important matters. 5½ hours total!

As it turned out, it was just the necessary thing to do. Most delegates had read and considered the important issues, so we could make the handling of the major topics swift with clear decisions to work on from now.

I, for one, however, did miss terribly the opportunity to be able to discuss some other important issues that we have to consider in our national and local groups regarding PR, fundraising, clinical trials, new medications and ways to gather and keep members active in our groups. This will have to wait for next year’s meeting perhaps as issues for workshops or general discussions. It would, however, be nice to be able to discuss these issues while they were there and present for all. Next year might prove to be urgent on other matters.

Immediate Results
This is a short run down according to the agenda’s main points of interest and according to my notes – not the official minutes (!):

4. Reports by Secretary, Treasurer and Projects Advisor.
Main point of interest in the reports is that the fundraiser is cancelled, as I informed you about in the report from the board meeting June/July. Yvonne Norton had then taken upon her to continue the fundraising activity in England based on the same material as the fundraiser and has come up with nothing. This venue was thus decided to close.

Further more Brian Hanner informed us about the new idea of changing the name from ELEF to Lupus Europe. The change was readily accepted at the convention, but also acknowledged that such a change will require quite some time and effort due to UK Charity Laws, under which we are governed. We cannot expect the official go ahead on this until next year. Yvonne Norton, UK, will do the necessary work for this.

5. Constitution
– proposed changes was accepted at the convention, which will make it easier to go through the handling of UK Charity Law, so it will be officially accepted for us to work on in the future. Now the constitution will allow Lupus groups within an umbrella organization involving other diseases than Lupus to be members, AND the board will consist of 6 members – chair, vice-chair, treasurer, secretary and two additional members. This in order to insure continuity and flexibility.

Special appointed board members like advisors (pt. Brian Hanner, projects, and dr. Matthias Schneider, medical) will still be operating, but now not with voting rights. Finally, the new changes to the constitution allow an election of two board members every year, so that each member will serve on a three year rotational basis. This off course is to ensure continuity and steady involvement according to our needs.

6. Election of Vice-Chair and Trustee
This year after the acceptance of the new changes to constitution, Rudi, Rudolf Hocks was re-elected Vice-Chair without competition, as Marianne Rivière from France had withdrawn her candidacy. There was no candidate for the newly defined extra trustee: this seat will be vacant for the next three years.

7. National Reports
– this year a very swift, short and limited presentation of what the members had to offer of inspiration and account of achievements. Due to the extremely short business schedule. I didn’t catch any new ideas or suggestions for promotional activities, even though I’m sure we could have gotten some, if the time had allowed.

8. Management Guidelines
– the manual for the Trustees to use as reference has not been finished, but will be, as the Chair promised us. I suggested that the Guidelines also would include design brief for the web site, manual for staging patients’ events in Europe beyond the ELEF conventions and also the here later explained notes on definition of ELEF Ambassadors. That was accepted.

9. Web site
– even though the board has been more than reluctant to accept any development on this matter – it was now decided to go forward on the ideas presented in the past documents re strategy for web site and design brief for web site together with the present possibilities to do something easy and quick with almost nothing in investment, as Rudi presented it: A pre-developed platform will form the basis upon which we can develop our own site with different functionalities like forums.
We have acquired the domains for Lupus Europe respectively .net, .eu, .org with and without the – (hyphen) together with our present impossible address. The domains EUR 110/year, server capability of 100 Mb, EUR 360/year and development of web site in of EUR 5.000 were allowed by total vote. This is not our dream, but the best and most feasible obtainable within the limited budget.
Volunteers for the project group were noted:
• Rudi Hocks, Germany,
• Kirsten Lerstrøm, Denmark,
• Fransesca Marchiori, Italy
• Simone Müller-Pretis, Germany
• Nele Cayers, Belgium
We will finish the detail planning and submit a short description of what is to be developed to the Board, before starting the development.

10. ELEF Common Cause
– the project proposal as described was accepted. Brian Hanner suggested that we should present this project for the Lupus Foundation of America to be the topic of next year. Rudolf Hocks is ELEF’s international contact and will be in charge of this.
A project team was formed:
• Yvonne Norton, UK
• Matthias Schneider, Germany
• Augusta Canzona, Italy
• Jean-Paul Sanders
• Kirsten Lerstrøm, Denmark
We will finish the project description and announce the initiative to all member countries to follow.
The team will also start up the fundraising activities.

11. EULAR Recommendations on Lupus
– Patients’ version as described in the draft proposal was accepted.
Volunteers for the team was noted.
• Nele Cayers, Belgium
• Simone Müller-Pretis, Germany
• Maria Toledo, Belgium (French)
• Kirsten Lerstrøm, Denmark

Medical advisors and members of the EULAR editorial committee to be contacted:
• Matthias Schneider, Germany
• Gunnar Sturfelt, Sweden
The team will finish the project description and prepare the application for funding to be submitted to EULAR. If the application is accepted, the team will set up the editorial committee and commence work on preparing the patients’ version of the EULAR Recommendations.

– ELEF Patients’ Event at the at the occasion of the 7th meeting of Lupologists in Amsterdam was not chosen. This due to first of all the dates 7-10 of May, where WLD in most countries would already attract the main interest. Furthermore, considering the very short time span to stage an European Event like this, much longer time is required than available at the moment. Creating a European Patients’ Event like this should give people the time to plan for travel, funding and engagement. It was then decided, that ELEF will be partner of the next EuroLupus 8th convention in Copenhagen 2011, as this event of gathering lupologists from all over will take place here next time in three years. And ELEF should be the natural partner of staging the adjoining patients’ event on this occasion.
However, the Dutch and Belgian Flemish Lupus Groups will arrange a patients’ event at Lupus2008.

13. Affiliation with other organizations.
ELEF Ambassadors - Ineke Boomker, Holland, and Nele Cayers, Belgium, have presented their ideas on how to manage ELEF representation at Lupus gatherings around the world. The main issue is to provide a specific brief for the person assigned to be ELEF Ambassador, in order to act on ELEF’s behalf. This brief should be agreed upon by the board and be clear to what objectives and missions our ambassador(s) should gain while representing us at this particular venue. The other obligations are described in the notes.
This was accepted at the convention.
Suggestions for future ELEF Conventions – Nele and Ineke had also made notes upon how to
compose the programme for ELEF conventions. This was due to the present agenda of only 5½
hours business sessions during four days of meeting. Really not acceptable by any means. Thus the
suggestion was to place real business sessions on the Friday and Saturday, so that delegates
wouldn’t have to make do for more than one working day and one day during the weekend
accommodating family matters and or job. This was not approved by council (votes 7 for 9 against).

14. Other Business – Deadline Caring& Sharing is October 15th .This deadline also covers responses to the proposed plans as sent to you earlier re. papers from Shanghai about Lupus Foundation of America’s proposal on founding an International Lupus Foundation, ILF, and also about involving us all in clinical trials. The national groups should send their replies to Rudi Hocks directly. Articles for Caring & Sharing should be sent to the Secretary Tony Bonello. Yvonne and Kirsten told the council about the EuP4Light project, where new EU directives for domestic, public and corporate lighting are prepared at the moment. Special consideration to light sensitive people like us will be adopted into the new directives. An article about this will be prepared for Caring & Sharing.

15. Human Genome Sciences
Please check the attached slides for further reference. As mentioned earlier it was very interesting to be able to continue the discussions with these people while on the boat tour on Rhein.

16. Medical Session – Psychological, psychiatric and MRI examinations of patients with SLE: Preliminary results of a prospective study
By Neuropsychologist Mag.rer. nat. Schermuly, University of Mainz

17. Medical Session – Diagnostic problems and pitfalls in clinical management of LE
By Prof. Dr. med. Andreas Schwarting, University of Mainz

18. Medical Session – Cytokine regulation of Lupus Nephritis – from bench to bedside
New schemes of research into the LF6 factor!
By Hannes Cash, University of Mainz

Board of Trustees:
Chair Jean-Paul Sanders, Belgium (Flemish)
Vice-Chair Rudolf Hocks, Germany
Secretary Anthony M. Bonello, Malta
Treasurer Peter Norton, England
Special Tasks Ineke Boomker, Holland
Project Advisor Brian Hanner
Medical Advisor Prof. Dr. Med. Matthias Schneider, Germany (not present)

Delegates (beyond the ones represented on board):
CIB-Liga, Belgium (Flemish) – Neele Cayers
CLAIR, Belgien (Fransk) – Maria Toledo
AFL+, France – Marianne Riviére + Andrée Hamon
Felupus, Spain – Isabel Diaz
Lupus Italy, Italy – Augusta Canzona + Fransesca Marchiori
Lupus Support Group, Malta – Yvonne Bonello
SLEV, Switzerland – Britta Krismer
Lupus Group, Germany – Borgi Winkler-Rohlfing + Karsten Lange + Simone Petis
SLE-netværket/Lupus DK, Denmark – Kirsten Lerstrøm + Hanne Rasmussen
The Irish Lupus Support Group, Ireland – Mary Feehan
Lupus UK, England – Yvonne Norton

Members not present:
Lupus France – Ginette Volf-Philippot
Lupus Association, Portugal – Dr. Rita Andrea
Lupus Cypros – Josephine
SLE-gruppen, Sweden –
Lupus, Israel – Sandy Noymer
Lupus, Iceland – Laufrey Karlsdottir
Lupus, Hungary – Gabriella Schopper
Lupus, Finland – Jaana Hirvonen
Lupus-gruppen, Norway – Fatima Lavoll

Aspiring member, but not present
Lupus, Slovenia – (not able to participate, so not yet admitted as member)