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The News Letter JULY- LUPUS EUROPE




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 Nele@ReumaNet.be


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 rhlupus@aol.com or Kirsten Lerstrøm at kirsten@lerstrom.dk



*** 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 rhlupus@aol.com or visit www.emea.europa.eu 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 ambonello@hotmail.com by the middle of October 2009.



25th July 2009
Nele Caeyers
Secretary LUPUS EUROPE

TC

The Newsletter of LUPUS EUROPE June 2009


Dear Friends,

As many of you will know, next week the EULAR conference will start in Copenhagen. During four days, the capital of Denmark will be the centre of Rheumatology in Europe, even the world.
LUPUS EUROPE will also be there. In this Newsflash, we would like to inform you about our actions.
Please spread the information among your members, we want to welcome all of you at our stand in Copenhagen.


We wish you pleasant reading.
Trustees of LUPUS EUROPE



*** LUPUS EUROPE STAND ***
For the first time, LUPUS EUROPE will be visible at EULAR at all times. We will have a stand in HALL C5, stand NP2, close to the Cyber Café, and across the aisle from EULAR Village. As this was made possible only recently, we could not inform you any sooner, sorry for that. LUPUS EUROPE will make sure leaflets are available to spread our message around Europe and further. Banners were made to attract people to our stand. And of course, the Board of Trustees will be there most of the time to inform interested visitors about our cause.
If you will attend EULAR, please bring any promotional material of your organisation to the stand. We will be happy to put it there for everyone to see, read or take out. As time is short, it might not be possible for you to send promotion materials from your organisation to Copenhagen by post if you are not attending the conference. Please, do ask your local post office, it might still be on time. If you do send any materials, please send it to

Kirsten Lerstrøm
Dyssevangen 24
DK-3520 Farum

While at EULAR, please stop by and pay us a visit. It will be wonderful to see you again.


*** Satellite Symposium at EULAR ***
European League Against Rheumatism

LUPUS EUROPE is very proud to present the Satellite Symposium on Lupus – Considering the Future, on Friday, 12th of June, at 17.30h, during the EULAR congress in Copenhagen, organised together with and by the support of UCB.

With Professor David Isenberg (UK) as chair, three prominent consultants will present important topics, relevant to people with lupus and their carers, and Kirsten Lerstrom (Denmark) will give a lecture from the patient’s perspective.

If you attend the EULAR Congress, you are most welcome to attend the Satellite Symposium. A report on the event will be distributed to all members after EULAR.

EULAR Congress this year has also brought more attention to Lupus/SLE, as besides our Satellite Symposium. It will be the topic of three business sessions - clinical trials, Best Practice and biology (relapse and remissions). Other lectures during the four days of Congress will also feature lupus/SLE.

Nele Caeyers, LUPUS EUROPE Secretary, will be chair at three sessions and giving two speeches. Kirsten Lerstrøm, LUPUS EUROPE Trustee, will also be speaking at a PARE session.

If you want to know more about this symposium, please contact the Secretary at Nele@ReumaNet.be or Kirsten Lerstrøm at kirsten@lerstrom.dk

Further information on EULAR can be found on www.eular.org.

*** Internet Survey for the Satellite Symposium at EULAR ***

As much as 435 people have filled in the online survey. Thank you all for this great response. Results will be discussed during the Satellite Symposium of LUPUS EUROPE at EULAR.

June 2009
Nele Caeyers
Secretary LUPUS EUROPE
TC

Send postkort med sommerfugle til Simone

*** WORLD LUPUS DAY, May 10th ***
May 10th is coming closer. In a lot of countries all over the world, this has become a very special day and a golden opportunity to raise awareness for Lupus. LUPUS UK has developed a special text/e-mail action for May 10th which LUPUS EUROPE is asked to join with. In a separate attachment you will find a template that can be forwarded on May 10th. Please feel free to insert your own organisation’s logo. In this way, we can reach a lot of people all over the world. Please take action and forward this template letter to all your members.

If you want to know more about this initiative, please contact the Chair or Secretary


The German Lupus Group has started a wonderful action with postcards for WLD: check it out on
http://www.postcrossing.com/blog/2009/04/11/lupuscrossing---butterflies-are-crossing-the-world
Send Simone as many cards with butterflies as you can find, forward the address to all your contacts and raise awareness for Lupus.

Simone Müller-Pretis
Secretary to German Lupus Association
Weg zum Sportplatz 4
97076 Würzburg
Germany

TC

The Newsletter of LUPUS EUROPE
May 2009


Dear Friends,

In this second Newsflash you will find all details about the LUPUS EUROPE activities at the next EULAR conference. We hope we will meet a lot of you in June in Copenhagen, as it will be a most interesting program for Lupus patients.
Do not forget to fill in the survey, the outcome is very valuable to us.

If you have any items you would like to see in this Newsflash, please forward your news to the Secretary. Any comments are welcome too.

We wish you pleasant reading.
Trustees of LUPUS EUROPE


*** Satellite Symposium at EULAR ***
European League Against Rheumatism

LUPUS EUROPE is very proud to present the Satellite Symposium on Lupus – Considering the Future, on Friday, 12th of June, at 17.30h, during the EULAR congress in Copenhagen, organised together with and by the support of UCB.

With Professor David Isenberg (UK) as chair, three prominent consultants will present important topics, relevant to people with lupus and their carers, and Kirsten Lerstrom (Denmark) will give a lecture from the patient’s perspective.

If you attend the EULAR Congress, you are most welcome to attend the Satellite Symposium. A report on the event will be distributed to all members after EULAR.

EULAR Congress this year has also brought more attention to Lupus/SLE, as besides our Satellite Symposium. It will be the topic of three business sessions - clinical trials, Best Practice and biology (relapse and remissions). Other lectures during the four days of Congress will also feature lupus/SLE.

Nele Caeyers, LUPUS EUROPE Secretary, will be chair at three sessions and giving two speeches. Kirsten Lerstrom, LUPUS EUROPE Trustee, will also be speaking at a PARE session.

If you want to know more about this symposium, please contact the Secretary at Nele@ReumaNet.be or Kirsten Lerstrom at kirsten@lerstrom.dk

Further information on EULAR can be found on www.eular.org.


*** Internet Survey for the Satellite Symposium at EULAR ***

LUPUS EUROPE has developed in collaboration with UCB an online survey to offer you an opportunity to make your voice heard at the satellite symposium at EULAR. The anonymous survey will give a more clearer view on what lupus means for people living with it. The responses will be collated and discussed by the faculty at the Lupus Symposium. It will not take long to fill it in, so please go to the link below and help us raise awareness for lupus. Please forward this Newsflash to all your members and friends and tell them to open and complete the survey. DO NOT CUT AND PASTE the hyperlink. The more results we get, the better. The survey is in English, but easy to understand.

http://www.surveymonkey.com/s.aspx?sm=mi_2fHT_2bGMhGTqP_2bUYIBNE8Q_3d_3d

Three important things to know:
• We have a target of 70 responses from each country.
• The survey will close in the first week of June. After this date you will not be allowed access.
• You can go back to previous pages in the survey and update existing responses until the survey is finished or until you have exited the survey. After the survey is finished, you will not be able to re-enter the survey.

If you want to know more about this survey, please contact the Vice-Chair Rudi Hocks or the Secretary.


*** LUPUS EUROPE TRUSTEE MEETING ***

The next Trustee Meeting will take place in Copenhagen, Wednesday, 10th June. A further Meeting will be held on Saturday, 13th June, when the Trustees will be able to evaluate the success of the Lupus Symposium and the overall involvement of LUPUS EUROPE at EULAR.


*** Thanks to… ***
LUPUS EUROPE would like to thank the following company for its financial and logistical support:
UCB for their help and support with the Satellite Symposium and the Survey.


May 2009
Nele Caeyers
Secretary LUPUS EUROPE

TC

Nyhedsbrev Vinter 2008


CARING & SHARING – WINTER 2008

LUPUS EUROPE
Address:
St. James House, 27-43, Eastern Road
Romford, Essex, RM1 3NH United Kingdom
Tel: +44-17.08.73.12.51
Fax: +44-17.08.73.12.52
TRUSTEES
Chairperson, Yvonne Norton
8, Legge Lane, Coseley,
West Midlands, WV14 8RQ
United Kingdom
Tel: +44-19.02.49.82.36
Email: yvonne@wmlg.freeserve.co.uk

Special Tasks, Ineke Boomker
Niersstraat 12
5626 DW Eindhoven / Acht
The Netherlands
Tel: +31-40.26.23.509
Email sj.boomker@hetnet.nl

Vice Chairman, Rudolf Hocks
Johannes-Luth-strasse 33
D-65520 Bad Camberg
Germany
Tel: +49-64.83.80.44.77
Email: rhlupus@aol.com

Trustee, Kirsten Lerstrøm
Kålundsvej 1 C
DK – 3520 Farum
Denmark
Tel: +45-44-99 49 99
Fax: +45-44-99 40 99
Email: kirsten@lerstrom.dk

Secretary, Nele Caeyers
Bresserdijk 75,
B – 2400 Mol
Belgium
Tel: +32-14-32 23 99
Email: nele@reumanet.be

Communication Advisor,
Anthony M Bonello
202/6, Tower Road,
Sliema SLM1602
Malta
Tel / Fax: +356-21.31.13.10
Email: ambonello@hotmail.com

Treasurer, Peter Norton
8, Legge Lane, Coseley,
West Midlands, WV14 8RQ
United Kingdom
Tel: +44-19.02.49.82.36
Email: peter@wmlg.freeserve.co.uk

Project Advisor, Brian Hanner
19 Keeble Park Maldon
Essex CM9 6YG
United Kingdom
Tel: +44-16.21.84.27.82
Email: brian@hanner.org.uk

Medical Advisor, Prof. Dr. med. Matthias Schneider
Heinrich-Heine-University, Department of Rheumatology
D-40001 Düsseldorf, Germany
Fax: +49-21.18.11.645; Email: schneider@rheumanet.org

Trustee meetings are held four times a year.
The LUPUS EUROPE website: www.elef.rheumanet.org
Website and LUPUS EUROPE Register Manager:
Rudolf Hocks (Germany): rhlupus@aol.com
To contact LUPUS EUROPE
by Email:
elef@rheumanet.org


CARING & SHARING
“Caring & Sharing” is the newsletter of LUPUS EUROPE, published in December each year. Articles are to be in
English only and sent to the editor by the 15th October. Articles appearing in the newsletter do not necessarily reflect the
opinions of LUPUS EUROPE, its officers or members. The editor’s decision regarding publication is final and the right
is reserved to edit or shorten articles.
Anyone submitting original papers for publication and wishing to reserve copyright, should ensure that their full name
and the year of publication, together with the © sign is added to the end of the article.
Editor: Anthony M Bonello (ambonello@hotmail.com)
Deputy Editor: Brian Hanner (brian@hanner.org.uk)
CARING & SHARING – WINTER 2008



LUPUS EUROPE INTERNATIONAL CONTACTS
BELGIUM (Flemish)
Nele Caeyers
Bresserdijk 75
B-2400 Mol
Tel/Fax +32-14.3223.99
Email: nele@reumanet.be
BELGIUM (French)
Maria Toledo
Avenue Seghers 84
B-1081 Bruxelles
Tel: +32-24.14.44.86
Email:
maria.toledo@swing.be
CYPRUS
Marios Kouloumas
P.O.Box 24966
Nicosia 1306
Tel: +357-22 42 82 85
Fax:+357-22 42 82 88
Email:
cyplar@cytanet.com.cy
DENMARK
Kirsten Lerstrøm
Kalundsvej 1 C
DK-3520 Farum
Tel +45-44-99 49 99
Fax:+45-44-99 40 99
Email:
kirsten@lerstrom.dk
FINLAND
Jaana Hirvonen
The Finnish Rheumatism
Association
Iso Roobertinkatu 20-22A
FIN-00120 Helsinki
Tel: +358-9 476.155
Fax:+358-9 642.286
Email:
jaana.hirvonen@reumalitto.fi
FRANCE (AFL+)
Marianne Riviere
34, rue Principale
Lemestroff
F-57970 Oudrenne
Tel: +33-82-55 09 23
Email:
riviere.marianne@wanadoo.fr
FRANCE (LUPUS)
Ginette Volf-Philippot
Rue de Rocroy 7
F-75010 Paris
Tel/Fax:
+33-1-45 26 33 27
Email:
presidente@lupusfrfance.fr
GERMANY
Rudolf Hocks
Johannes-Luth-Strasse 33
D-65520 Bad Camberg
Tel: +49-6483-80 44 77
Fax: +49-6483-80 44 78
Email: rhlupus@aol.com
HUNGARY
Krisztina Hever
Baross u. 20.1/2
H-9400 Sopron
Email:
kriszta@lupusz.hu
ICELAND
Laufey Karlsdottir
Lindarsmara 57
IS-201 Kopavagur
Tel: +354-564-45 53
Email: laufey@gn.is
IRELAND
Mary Feehan
Carmichael Centre
North Brunswick Street
Dublin 7
Tel: +353-1-493 19 88
Email:
desfeehan@eircom.net
ISRAEL
Geula Paz & Mazali Irit
PO Box 9009
Ramat -Efal
Tel: +972-2-535 03 76
Email:
lupus@netvision.net.il
ITALY
Augusta Canzona
Via dei Monti Tiburtini 558
I-00157 Roma
Tel: +39.06.451.53.40
Email:
lupusroma@virgilio.it
MALTA
Ian C. Lochhead
St.Paul’s Garden
Ix-Xwieki
Gharghur GHR 1815
Tel: +356 21.37.02.34
Fax: +356 21.37 74.02
Email:
elizian@malanet.net
THE NETHERLANDS
Ineke Boomker
Nierstraat 12
NL-5626 DW
Eindhoven / Acht
Tel: +31-40-262 35 09
Email:
sjboomker@hetnet.nl
NORWAY
Fatima Maria Lavoll
Bekkeveien 11
N-0667 Oslo
Tel: +47-22-75 81 56
Email: flavoll@online.no
PORTUGAL
Dr. Rita Andrea
Avenida Defensores de
Chaves No,27. 4 Dto
P-1000-110 Lisboa
Tel: +351-21-330 26 40
Fax: +351-21-314 62 16
Email:
associacao.lupus@clix.pt
SLOVENIA
Marjan Hudomalj
Parmova 53
Si-1000 Ljubljana
Tel: +386-1-436 22 80
Fax: +386-1-236 24 57
Email:
drustvo@revmatiki.si
SPAIN
Isabel Diaz
C/Lagunillas, 25
Locales 3 y 4
E-29012 Malaga
Tel/Fax:
+34 952 25 08 26
Email:
felupus@felupus.org
SWEDEN
Kerstin Kallander
Reumatikerforbundet
P.O Box 128 51
119 98 Stockholm
Tel: +46-8505 805 12
Email:
kerstin.kallander@reumaik
erforbundet.org
SWITZERLAND
Britta Krismer
Bogenweg 15
CH-8620 Wetzikon
Tel: +41-44-930 33 64
Email:
b.r.y.kismer@bluewin.ch
UNITED KINGDOM
Yvonne Norton
8 Legge Lane, Coseley
West Midlands
WV14 BRQ
T/F: +44-1902 49 82 36
Email:
yvonne@wmlg.freeserve.
co.uk

Artikel fra lupus.org



50 Years Without a New Lupus Drug



We Need to Share Stories with Congress and

Encourage Researchers to Keep Up Their Efforts



It's Time for People with Lupus to Make Their Voices Heard!





Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.



A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.



We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus.



At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.



So what does 50 years without a new lupus drug mean to you?



No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the outdated drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.



How can people with lupus help? Share their story!



We want people affected by lupus to send a two part email message to 50years@lupus.org, hopefully before November 20, but as soon as possible.



Instructions:



In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.



Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.



LFA will use your email message in several ways to help advance the science of lupus!



1. Deliver your message to Congress. During the LFA’s Annual Advocacy Day, lupus advocates will deliver your story, and the stories of others, to policymakers in Washington, DC. Be sure to include your name and your city and state in your message so we can deliver your story to your Representative.



2. Feature selected stories on the LFA website. While we are not able to promise that we can post every message and photo we receive, we will review each one and post as many as possible to our website and in our blog so the public also can learn about the impact that 50 years with no new drug has on people with lupus and their families.



3. Share your “Thank You” notes with Researchers and Industry Executives. Today there are hundreds of dedicated researchers and executives from pioneering biotechnology and pharmaceutical companies working hard to advance the science of lupus and conduct clinical studies of nearly 30 potential new treatments for lupus. We want these individuals to know how much you appreciate their continued focus on lupus.



We Need Your Help Now! Act Today!



Send your message and photo today (or by November 20) to 50years@lupus.org. Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.



Ask Others To Get Involved!



Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.





TC

KirstenLerstrøm, SLE ØST, er nyt bestyrelsesmedlem af LUPUS EUROPE - Trustee nr. 6

Herlig nyhed til SLEérne, Kirsten Lerstrøm skal varetage ledelsen af projektudvikling i LUPUS EUROPE!!!

Kirsten Lertrøm har gennem nogle år været den danske repræsentant i ELEF, som ved dette konvent undergik en "navne-forandring" til LUPUS EUROPE.

Kirsten har været aktiv på flere fronter, eksempelvis undersøgelserne omkring oprettelse af en hjemmeside for daværende ELEF nu LUPUS EUROPE, som skete i samarbejde med bl.a. tyske SLE-repræsentanter.

Kirsten har også samarbejdet med engelske SLE-repræsentanter omkring spørgeskemaet, som vi alle blev opfordret til at udfylde, omhandlende hvilket emne, vi ønsker LUPUS EUROPE skal sætte fokus på.

Nu er Kirsten medlem bestyrelsen, absolut velfortjent, og en stor gevinst for LUPUS EUROPE.

Så et stort tillykke til dig Kirsten

Tove Cassøe
OBS: Links

Her kan du læse nyhedsbrevet fra ELEF.

Nyhedsbrevet er på engelsk.

Nyhedsbrevet i PDF