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. 

CdLX0H6UkAEY0LS.jpg-large

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. 

WAD_Thunderclap_image_600x280px_6-10-14_1

WLF – World Lupus Day overview

12974286_972287666195190_3204235459714330691_n

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

cropped-lupus-europe-logo.jpg

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.