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!

 

Running with Germany

This week Andreas’ is running with the German Lupus association who are celebrating their 30th anniversary this year – and hosting our annual LUPUS EUROPE convention as part of those celebrations. Click the flag to see more.

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Reminder EPF survey on quality healthcare

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What does quality of healthcare mean for you? Take the EPF survey!

Deadline: 31st May 2016

Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care.

Please note that you do not need in-depth knowledge or experience on quality of care to complete the survey!

More information here.

World Lupus Day in France

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This week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations.

AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here.

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Among other activities planned for World Lupus Day, the association, Lupus France, asked its members to take up a challenge and wear purple or orange (or in some cases both) for Lupus awareness. Here is the video of their contribution (although in French, the visuals are easy for anyone to understand).

Lupus France’s chair, Ginette Volf, was also interviewed for World Lupus Day. You can find a link to that video here (video in French – the segment about Lupus is from 2 min 36 secs).

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In addition, here is a video, in English, filmed at Eurodis, the Rare Disease Platform, on the occasion of the press conference with Prf. Jean Sicilia,  Head of the National Reference Centre for Systemic Autoimmune Diseases and Miguel Sieler, CEO of Neovacswhich has developed a drug candidate against lupus., Professor Lupus France and Lupus Europe.”  With thanks to Labiotech.eu

Jeanette’s story

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When I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and keeping in shape meant a great deal to me and my well being.

I have had many symptoms of lupus from as far back as the year 2000, but I never thought to connect all the elusive symptoms like hair loss, joint pains, headaches, fatigue and depression in one disease. My husband and I were on our honeymoon in Bali when I got my first real flare.

We had planned a guided tour around the island but after a few days I started having fewer. The fewer went up and down a lot, but since it was my only symptom and there was no doctor nearby, we went on with the tour. After four or five days I had the opportunity to see a doctor and he took a blood test and gave me antibiotics. There are no laboratories on Bali, so the blood test had to be sent to Java for analysis, which takes four to five days. While waiting for the results I suddenly one evening had difficulty breathing and my chest started hurting. I was rushed to the emergency clinic, which consisted of a small open room with chairs and tables for examination. It was mostly used for the many motorbike accidents with scrapes and bruises and did not have the equipment nor the space for a patient like me. They thought I had an asthma attack or maybe a lung infection, so they treated me with a nebulizer and antibiotics in IV, which did not help at all. I got worse and worse and was brought to a larger hospital in Denpasar, the capital of Bali. They took x-rays of my lungs and saw I had an infection, which they treated with more antibiotics. This did not help at all, however, and I got to the point where I passed out and was brought to intensive care. I was hooked up to a lot of machines, which monitored my vitals and alarms kept going off because my body was giving up. My attending doctor was convinced I had a bad pneumonia and just needed more antibiotics, then I would get better. From my wedding day I had had a horrendous headache and this only got worse while I was in hospital. Some very nice nurses noticed this and called in a neurologist to have a look at me. She was the first one to really have a good look at my body and she noticed I had rashes on my legs, arms, chest and face and she had an idea, what it might be, but didn´t tell us. She performed a brain scan and called a rheumatologist and he had one look at me and told my poor husband: “Your wife has lupus”. Of cause he had to take tests to be sure, but he was so convinced he was right, that he started me up in 1000 mg. of corticoid steroids. After only two hours my body started to respond to the medication and the vital signs very slowly returned to normal. My husband did not believe, that this serious episode could be caused by arthritis, but he borrowed a computer, went online to the Danish arthritis association’s home page and read about lupus and suddenly all my symptoms from the past 11 years made sense. While I was recovering new tests were made and they all confirmed, that I had lupus. It manifested itself in my lungs, my heart, my brain and my central nervous system. After two weeks’ time I was so stable, that I could travel back home.

My lupus has turned out to be quite aggressive, partly because of my late diagnosis, and today the illness combined with side-effects from the medication has left me walking-impaired and a lot heavier than before. I am no longer able to work-out like I used to and a chronic headache alternating with migraines means I am no longer able to work. Since I still have my good education and I really needed to do something meaningful in my everyday life, I started as a volunteer in the Danish lupus association in 2012. I found such satisfaction in this work, that I have taken on more and more work since then. In 2014 I became a working group member of EULAR Young PARE and last year I was elected into the LUPUS EUROPE board. By volunteering for these organisations, I have the opportunity to help other people with an RMD, while still taking care of my own disease by only working, when I have the health and energy for it.

Although SLE has changed my life from a very active one, with a fulltime job and a lot of fitness in my spare time to a condition, where I am immobilised in a wheelchair and can work only a few hours a week, I have found a new purpose and meaning in life, by helping other people with RMDs all across Europe.

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