European Lupus Meeting – Venice October 5th-8th

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The European Lupus Meeting is a scientific congress focusing on clinical practice and lupus research in Europe, that takes place every other year. This year it will take place in Venice from October 5th – 8th. Between 500-700 people, with the majority being doctors from the rheumatology or immunology fields, but also various other specialties, will attend to get updated on what is happening in lupus.  Some people from industry and a few patients, among others, will also participate.
Earlier this year LUPUS EUROPE called all members and our online community to encourage the submission of abstracts with a patient perspective for the scientific review at the European Lupus Meeting 2016.
We received 6 eligible abstracts – and all 6 were accepted! Two for oral presentation in the programme and four for poster viewing during different sessions. This is a fantastic success rate and we congratulate everyone for their hard work:
Marina Falanga will present on THE ITALIAN SLE SURVEY BY WEB: INVESTIGATING PATIENTS’ UNMET NEEDS AND IMPROVING CARE SYSTEM THROUGH VIABLE ONLINE SURVEY TOOLS October 7th, Perla Room, at 12.10-12.20.
Davide Mazzoni will be giving his oral presentation of SOCIAL SUPPORT AND QUALITY OF LIFE IN SLE on October 8th, Casino Room 12.10-12.20.
Elena Forgione will present her poster Sociocultural context; Mind-Body; Doctor-patient relationship on the 7th, during the morning poster viewing session.
Amaia Dominquez will present her poster SYSTEMIC LUPUS ERYTHEMATOSUS; HEALTH-RELATED QUALITY OF LIFE (HRQOL); PAIN, also on October 7th, in the afternoon poster viewing session.
On behalf of Blanca Rubio, Kirsten Lerstrøm will present Capabilities of European lupus groups; Members of LUPUS EUROPE, also during the October 7th afternoon poster viewing session.
Patients are admitted without a registration fee which is a fantastic acknowledgement of the situation of the patients themselves as well as the groups they could represent. None have any funds to pay the rather substantial admission fee, when on sick leave or working on a voluntary basis. This year a small group of patient representatives has registered and, further to the above mentioned, a good group from Italy will be there, together with a couple from the UK, Denmark, Lithuania and France.
We are really looking forward to the four days of the European Lupus Meeting 2016!

Access to Healthcare survey – reminder

The European Patients’ Forum survey on Access to healthcare will be closing on 31st October. They still need your responses. The survey is very quick to fill out and your replies are very important. Thanks a lot for supporting EPF and their members (including LUPUS EUROPE) by taking this survey. You can find more information and a link to the questionnaire here.

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countdown… LUPUS EUROPE Convention 2016

There are just under two weeks to go before LUPUS EUROPE holds its annual convention. This year we will be in Würzburg, Germany and also celebrating the 30th anniversary of one of our members, Lupus Germany.

We are looking forward to an inspiring convention, with lots of things to share. See you there!

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Sunscreens survey

The European Society of Cutaneous Lupus Erythematosus e.V. (EUSCLE e.V.) has set up a European survey on sunscreen application in patients with lupus erythematosus. LUPUS EUROPE has been closely involved in this important project.

The aim of the observational study “Sunscreens in Patients with Lupus Erythematosus (SmiLE)” is to investigate the type of sunscreen applied by patients with lupus erythematosus and efficacy in daily life. This project was winner in the category “Leadership Community” of the Galderma SKIN PACT Award 2015. Detailed information on the study, its purpose and background are provided here: http://www.galdermaskinpact.org/winners/sunscreen/.

An online questionnaire for patients has been translated into 20 European languages. Patients with any type of systemic lupus can fill out the survey. You can go to the survey at this link and participate in this important project:

http://www.euscle.org/survey.

Please share the survey link to any lupus patients you know. The survey will be open until end of October 2016.

Voclosporin Success

Phase IIB Clinical Trial of Voclosporin Successfully Achieves Primary Endpoint

Good news posted yesterday on the Lupus Foundation of America website. To see the full article please click here.

“(Washington DC – August 15)  Today Aurinia Pharmaceutical Company announced positive top-line results of a Phase IIB clinical study of voclosporin, a potential new therapy option for people with active lupus nephritis (lupus-related kidney disease).  The study met its primary endpoint of achieving complete remission in a statistically significant number of study participants who received voclosporin. More details about this study are available through the company’s news release.

Survey on Access to Healthcare

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EPF launches its survey on Access to Healthcare. This is a project that LUPUS EUROPE has been actively involved in as a participant in the Access to Healthcare work group at EPF.

Designed by patients and patient representatives, EPF launches a unique survey on access to healthcare. Share your experience on access and help us to design the EPF campaign on access to healthcare in 2017!

And don’t forget to share it with your network! The more replies we have the better; your input is vital evidence for EPF’s advocacy work on the topic!

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Questionnaire on pregnancy in Lupus & other rheumatic diseases

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Dr. Joseph Joseph an associate professor in Rheumatology at the University of Nicosia is conducting about women who gave birth after their diagnosis. For more information please visit the website: www.pwird.com
If you fill the criteria to reply, your contribution will be much appreciated.
Once the survey is completed results will be shared with LUPUS EUROPE.

Stene prize

Stene Prize

Every year EULAR and the Standing Committee of PARE offer the Edgar Stene Prize for the best essay on a previously determined topic. The winner receives a prize money of EUR 1,000 is awarded during the Opening Plenary Session at the Annual EULAR Congress and is invited to the congress dinner. In addtion, travel costs to the congress and four nights accommodation are covered by EULAR. The second and third winner receives a prize money of EUR 700 and EUR 300 respectively.

The national organisations of people with arthritis/rheumatism invite all people with RMDs in their countries to participate in the competition by writing and submitting an essay on the topic of the year. Essays may be written in any national language and should not exceed two typewritten pages. Persons who are professionally connected with rheumatology are excluded from the competition.

The best entry from each country will be submitted for the final decision made by the jury elected by the PARE Standing Committee.

Entries for 2017 are to be submitted to the national EULAR member patient organisation by 31 December 2016.

 

For further information, rules of entry and previous essays please click here. 

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Simon Stones, winner of the 2016 Edgar Stene prize

 

EULAR Young PARE youth meeting

SAVE THE DATE

 2nd EULAR Young PARE youth meeting 
Friday 21 October – Sunday 23 October 2016
Corsendonke de Linde, Retie, Belgium


This email serves for you to block the dates in your calendar, for when our 2nd EULAR Young PARE youth meeting will take place. The location is Corsendonke de Linde, Retie, Belgium.  Please share this email with anyone who would be interested in attending. 

Why are you receiving this email? 
1. You’ve been chosen as the youth contact person for your organisation*
2. You are the dedicated PARE liaison and we want all PARE organisations to be informed what is happening in EULAR about activities from Young PARE
3. You are between 18 and 35 years old and have attended the EULAR Annual European Conference of PARE in Sofia 2016

Criteria for the participants include: 
• 18 to 35 years old
• living with a rheumatic or musculoskeletal disease (RMD), or closely working with young people with RMDs (e.g. carers, patient advocates)
• one young person per organisation*
• 35 participants in total will be chosen by the EULAR Young PARE working group  

* organisation (in this context means) either member organisation of PARE, youth organisation, youth group 

More information will follow very soon. We look forward to seeing you!


Kind regards,

Florian Klett, on behalf of

The EULAR Young PARE Working Group

Website: www.youngpare.org
Facebook: 
www.facebook.com/EULARYoungPARE
Twitter: 
www.twitter.com/EULARYoungPARE 

World Arthritis Day – Share your story

Here is a video featuring Claudine Goyens (who has also written a patient story for LUPUS EUROPE) who encourages us to submit our story for World Arthritis Day.

For more information on World Arthritis Day and the stories, please click here.

The deadline for submission of stories is 29th July 2016. 

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WLF – World Lupus Day overview

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Here is an overview of the common World Lupus Day campaign compiled by the World Lupus Federation on the extent and spread of the joint World Lupus Day Campaign.

Duane Peters, who has been coordinating the WLF campaign, has told us that the response received has been excellent, especially the results of social media efforts.  News about the global lupus survey conducted by GSK was shared by many people through Facebook.  Here is a link that shows the feed of people posting about World Lupus Day AND the survey.

https://www.facebook.com/search/top/?q=%22world%20lupus%20day%22%20AND%20%22survey%22

The response on Twitter for World Lupus Day was also very good. The level of spontaneous response that has accompanied the postings of the WLF and its affiliated members is excellent.  Millions of impressions for lupus.

https://twitter.com/search?q=World%20Lupus%20Day&src=typd

WLF social media posts on Facebook generated 657,000 reactions and 81,000 engagements.  Posts that specifically referenced the survey data generated 398,000 reactions and 30,000 engagements.  Total reach through Twitter was 23-million, generating 5-million impressions.  There were a number of important Twitter and Facebook posts including Huffington Post, Mashable and Julian Lennon, along with many medical institutions, corporations, and other nonprofit and lupus patient groups.  #worldlupusday was very prominent on 5/10.

Pickup on the survey release by leading news outlets was great.  From all indications, it appears the media outreach was very successful.   Some big hits include Yahoo Finance and Reuters Online.  Combined they represent a potential audience of over 100-million website visitors.

There were great placements on Lupus News Day, Medical News Today, and RTT News:

http://www.medicaldaily.com/world-lupus-day-social-stigma-autoimmune-disease-385220

http://www.rttnews.com/slideshow/3404/living-with-lupus-hiv-aids-may-10-autoimmune-disease-world-lupus-day-non-contagious-disease-lupus-foundation-of-america-late-diagnosis-awareness.aspx

http://lupusnewstoday.com/2016/05/10/lupus-survey-story/

Traffic to the World Lupus Day website during the three-day per was great, with a 177% increase over the previous year.  Traffic to the lupus.org website also was up 71% for the period.  There were 10,700 views of the survey release on our lupus.org  website.  Total combined website visits during the period were 123,093.

There were 10,700 views of the survey news release on our lupus.org  website during the three days. This would be in addition to the views generated through the online news posting of the Marketwired distribution I had shared with you earlier today.

There were many events around the world in observance of World Lupus Day.  Many of these were shared on the World Lupus Federation Facebook news feed.   The WLF could only share a very small fraction of the World Lupus Day posts but this feed provides a very nice cross section of activities conducted on May 10.

https://www.facebook.com/worldlupusfederation

LUPUS EUROPE YOUTH – Facebook group

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As part of our initiatives directed towards youth, trustee Jeanette Andersen, who is responsible for youth related work, has set up a LUPUS EUROPE YOUTH group on facebook. Here is what she has to say about the group.

“A group for all young people (aged 18-35) with lupus in Europe. Whether you have a youth group or not this is a group where you can share ideas and good advice with other young lupus patients. Our hope is to connect young people with lupus all across Europe and hopefully start new national lupus youth groups.”

 

Video interview with Anne Charlet

Here is a video extract from an interview with Anne Charlet, vice-chair LUPUS EUROPE, speaking to MedTech about her daughter living with lupus.

You can see Anne’s full World Lupus Day interview here.

Convention registration reminder

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Has your member group registered for the LUPUS EUROPE convention yet? Remember that the deadline for special conditions is 15th June 2016.

The convention will take place in the beautiful historical city of Würzburg, Germany from 28th September – 2nd October 2016. It is also an important occasion for our hosts, the German Lupus association, who are celebrating their 30th anniversary, a cause for great celebration!

We have a full programme of events as well as our council session and trustee nominations. Two trustee positions are up for election, so if you, or anyone in your national team, are interested in joining LUPUS EUROPE’s Board of trustees, please apply. Renewing trustees is essential to an organisation’s growth and efficiency. If you have considered becoming a trustee but are unsure of what it involves, don’t hesitate to get in touch with the secretariat or any of the trustees for more information. We can all be contacted at our email addresses which are made up of our first name followed by @lupus-europe.org (e.g. katharine@lupus-europe.org).

More information about the convention is and will be available in the member section of our website at this link. If you are having trouble logging in to your member area, please get in touch with the secretariat.

We look forward to seeing you in Würzburg!