Europe

Lupus Europe

For the first time ever, LUPUS EUROPE will be providing artwork for all 21 member countries (23 member groups) for use in WLD projects. Using the theme Make Lupus Work, the artwork consists of A3 poster with photos and status of lupus patients throughout Europe along with top-line statements taken from the on-line Survey: Living with Lupus – Career/Work Situation. An A4 poster has the same text with photos of delegates to LUPUS EUROPE Annual Convention in Copenhagen September 2011. Further artwork is 148x148 being text only. The three items will all be personalised for each member group and sent electronically as pdf. An A4 leaflet (Word) explains the project and gives suggestions for the use of the posters. A further A4 leaflet What is Lupus? Gives a brief outline of lupus for the countries which may find such information of use. The poster will be on the Home Page of LUPUS EUROPE website and member groups are requested to post it on their national and regional websites also on social networks e.g. Facebook and Twitter. See the A3 poster and text (pdf). The text could be reproduced as a postcard and sent to Lupologists, Health Ministers, MPs etc to highlight the impact that lupus can have on career/work. LUPUS EUROPE will also have a WLD page on its website where events in the member countries/groups can be highlighted. Member countries are also asked to take part in the multi-text project which has been so successful throughout Europe the past two years. Learn more about the multi-text project (pdf).

Contact: Yvonne Norton - chair@lupus-europe.org
Website: www.lupus-europe.org

Belgium

Belgian CIB-league
World Lupus Day will take place on 10th May itself, in hospital Gasthuisberg in Leuven. Between 11 am and 17 pm there will be members present of the CIB-league with an informationstand. We are there to answer the question of patients and visitors. We will also hand out leaflets of our illness and organisation. There is also a poster of World Lupus Day available, the meaning is to put it on a place where many people pass, or to give it to our doctor, pharmacist, ... Lupus should that day be noticed in the whole of Flanders!
For more information, please visit http://www.cibliga.be/

Association Lupus Erythémateux
This year, we will be present in four hospitals in every part of the South of Belgium : two stands in Brussels (hopital Erasme and Cliniques Universitaires Saint-Luc), one in Mons (west) at CHU Ambroise Paré and one in Liège (East), at CHU Sart Tilman. Between 9 and 16, we will inform people, both patients and visitors and provide them leaflets or flyers about the association and the lupus. Please follow the link : http://www.lupus.be/spip.php?article127
Email: presidente@lupus.be

Cyprus

Cyprus League Against Rheumatism
We will celebrate the lupus day as follows

Workshop about the power of mind-positive,negative thoughts and a presentation of yoga including excercise.it will be held at the HILTON PARK HOTELin NICOSIA CYPRUS,on 12th of May,11.00-13.00. AVENE will give practical advice for skin care
a new leaflet with practical information and advice concerning life with lupus
articles in the local press as well as participation in radio and tv programmes

Website: http://www.rheumatism.org.cy/
Email: cyplar@cytanet.com.cy

Denmark

Lupus DK
Make LUPUS Work is the theme for the LUPUS EUROPE campaign for WLD 2012, as:

Lupus has life changing consequences when only 52 % are in employment. For about 28% the change happens within a year after diagnosis. Time of diagnosis is in average at 37 years of age, 9 out of ten are women.

These are some of the results from the patient-led survey Lupus European Online – LEO, bringing attention to the detrimental effect lupus has on the career/work situation of many people with lupus in Europe.

In Denmark, the World Lupus Day will focus on this important aspect of living with lupus and the programme offers topics like: Student and work life, better knowledge of own disease and how new and improved treatment options will influence education and career choices. The final topic of the day will be a presentation on a special “Know your lupus” – educational programme planned, designed and organized by the patient organization for the patients

Learn more about the World Lupus Day program (pdf)

Website: www.sle.dk
Email: kirsten@lerstrom.dk

Estonia

Estonian Rheumatism Association
LUPUS DAY IN ESTONIA – „MY LIFE WITH LUPUS“

The purpose of the activities on World Lupus Day is to improve the coping of lupus patients and their family members by distributing relevant and necessary information.

We want to inform health care workers about the essence and prevalence of lupus, the progression of the disease as well as the role of family and support people as well as the existence of a support group.

We are going to issue a special edition of the Estonian Rheumatism Association monthly e-newsletter dedicated to the subject of lupus. This will include information on the risk factors and prevalence of lupus in Estonia, the 10 years of work by the lupus support group, the World Lupus Day, the seminar to be organised in the autumn, and on creative therapies for lupus patients.

In addition, we are going to issue the booklet „My Life with Lupus“. The booklet gives an overview of the essence of the disease, its diagnosing and treatment as well as offers advice for better coping with the disease.

We are going to distribute the monthly e-newsletter as well as the booklets to patients and health care workers. The electronic versions are available on out websites.

Additional information:
Estonian Rheumatism Association
Eesti Reumaliit
Email: reuma@reumaliit.ee
Website: www.reumaliit.ee

Estonian Youth Rheumatism Association
Eesti Noorte Reumaliit
Email: luupus@reumaliit.ee
Website: http://eestinoortereumaliit.com/

Germany

Lupus Erythematodes Selbsthilfegemeinschaft e.V.
3rd German Lupus Day on Science, Dresden
Conference on SLE, including awarding this year's researching prize of the Lupus Foundation Germany
Invited to this medical symposium are all lupologists, rheumatologists and other professionals.
May 11 - 12, 2012
More information: http://www.lupus-stiftung.de/

Wonder of Arts II, Bayreuth
Benefit concert in aid of the Lupus Foundation Germany
May 12, 2012 at 19:00 h
More information

Balloon campaign "40,000 balloons for 40,000 lupus patients in Germany"
throughout Germany, different days

LupusCrossing
Our famous postcard project in cooperation with www.postcrossing.com started for WLD 2009 and still continues.
About 325 butterfly cards have been received from all over the world to raise awareness for lupus and to demonstrate support for lupus patients.
For more information, please click here and here

Information desks
throughout Germany, different days

Email: simone.mueller-pretis@lupus-rheumanet.org
Web site: www.lupus.rheumanet.org

Hungary

Gabriella Schopper Hungarian Lupus Group
Lupus Day in Hungary, 2012

On June 23, 2012, we are planning to go to a nearby Safari Park in Budakeszi. We invite all of our family members and our friends who feel like spending together a nice and pleasant day in the nature with many talks and much experience. If the weather is gloomy and rainy, we are going to the Tropicarium zoo park in one of Budapest’s suburban district. Our aim is just to have fun together when forgetting our illness. We are preparing some tea and mineral water to everyone as usual.

Information: http://www.vadaspark-budakeszi.hu/index.php
Information: http://www.tropicarium.hu/?a=welcome&lang=en

We organize this event in June because in May we have another programme: we are having a Barbecue party at Szegvár, in a countryside town where the chair of our group, Zoltan Purgel will be preparing lunch to us. The town itself is also offering many interesting pastime activities: sightseeing tour by a farm-wagon, boating and water-cycling.

Date and Time of Events: 13th May and 23th June at 10 am. Location: Budakeszi
Website: http://www.lupusz.hu/
Contact: Anna Janecsko
Email: anna@lupusz.hu

Ireland

Lupus Group Ireland
For World Lupus Day, Lupus Group Ireland will:
Unveil and go live with their brand new interactive website. This site will have 21 individually designed pages, created by a very talented web designer exclusively for Lupus Group Ireland. This website will be interactive providing 24/7 support for Lupus Patients. There will be stories from patients and family members of patients, there will be information on symptoms, diagnosis, medications and most importantly a question forum on flash chat. The designs are one of a kind created exclusively for the Group.

We also intend to unveil our Android Application which will be downloadable from an app store and from our website. This application will be designed in a game format, it will allow people to progress further by answering Lupus related questions. This app will be an innovated, fun and new way to learn about the condition Lupus. This app will be named "Lupie".

Date and Time of Event: 10th May at 2pm
Contact: Jessica O' Bryan
Number: 353860795263
Email: info@lupusgroupireland.com

Italy

Lupus Italy

Bologna: May 12
World Lupus Day Celebration
Policlinico S.Orsola Malpighi
National Congress of the Italian Lupus Association

Firenze: May 19
Florence Lupuc Clinic meets the patients

Catanzaro, Benevento: May 5-6
Sassari: May 19
Napoli: May 15

Email: lestoscana@gmail.com
Website: www.lupus-italy.org

Netherlands

Nationale Vereniging LE Patienten
Activity: NVLE Patiëntencongres lupus/APS
When: Saturday, May 12th
Time: 11.00 – 17.00 hrs.
Place: Partycentrum Het Vechthuis in Utrecht
More info: www.nvle.org

To celebrate World Lupus Day, the NVLE association organizes a big conference for lupus patients on Saturday the 12th of May. This day is taken care of down to the last detail.

Several speakers, patients and professionals, will throw light on the developments in the treatment of lupus. Also at this day, the NVLE will announce the winner of the NVLE Award 2012. This is a prize for researchers and clinicians who contributed to research on or improvements in the treatment of lupus.

Spain

Spanish Lupus Federation (FELUPUS)

As every year, the Spanish Lupus Federation (FELUPUS) commemorate WLD celebrating the XI Edition of our National Congress on May 4/5th. This year will be located in the north of Spain in Santander and it has been co-organized with the Lupus Association of Cantabria In this activity collaborate our 23 members as well as many doctors specialized in lupus, and we'll have more that 300 attendants. During two days, we will talk about different topics, and we’ll end the event with a closure dinner for speakers and attendants Leisure activities are prepared for Saturday. They are very appreciated by attendants because increase personal contacts and friendship.

For more information, click here to see the brochure (pdf)

In addition of this event, local groups celebrate date with many activities and workshops.

We continue publishing our magazine “LUPUS ESPAÑA”, available in our web, and other publications like guides, leaflets and books for children.

More info in www.felupus.org or contact felupus@felupus.org

Asociación de Lupus de Almería (A.L.AL.)

Comentaros que las actividades organizadas con motivo del día internacional de Lupus (10 de mayo) en Almería (España) son :

9 de mayo, mesa informativa sobre la enfermedad de Lupus en el Centro Médico de Especialidades Bola Azul (Almería).
10 de mayo, mesas informativas sobre la enfermedad de Lupus en el paseo de Almería .
12 de mayo, asistencia a la reunión de pacientes del 8th Internacional Congress on Autoimmunity (Granada).
19 de mayo, mesas informativas sobre la enfermedad de Lupus en la localidad de Adra (Almería).

More info: http://www.alal.es/

Lupus Galicia
We'll celebrate our day, May 10th with the installation of information desks arround Galicia and the celebration of the XIV Congress of Lupus in Galicia. We'll be as well answering questions about Lupus on internet:

All associations claim an increase in both public and private funds for medical research on lupus, targeted education programs to healthcare professionals, patients and the public in general and recognition of the importance of Lupus. In this sense, the University of Santiago has an open line of research on lupus via the Rheumatology Service, Hospital of Santiago de Compostela, in the Clincial Hospital of Santiago has been created a bank of blood samples of Galician patients with lupus. On the other hand in the Clinical Hospital of Coruña is conducting a study entitled "National Lupus Registry" with samples of affected patients in Coruña City

For more information: please email agal@lupusgalicia.org or visit www.lupusgalicia.org

United Kingdom

Lupus UK

At 12:30pm our members will email or text the following message to 10 people they know who do not have lupus – “Today is World Lupus Day please forward this message to 10 more people and help spread the message throughout the world Thank you. LUPUS UK Reg. Charity Nos. 1051610, SC039682 www.lupusuk.org.uk”
Many schools across the UK will be holding events to promote World Lupus Day. Participating schools have been sent posters to display and a bookmark for each child that they can colour in. Hopefully the children will read their bookmark, then take it home and show it to their parents – two generations learning about lupus through one action.
All LUPUS UK members have received posters and stickers to put on mail going through the postal system.
Our followers on Facebook and Twitter will be changing their profile pictures to that of a Butterfly to help raise awareness in a viral campaign. The idea is to pique people’s interests and make them wonder why their friend has a butterfly on their profile. This will raise discussions about lupus.
We will also have many members holding smaller events all across the country.
The Spring edition of News & Views (national magazine) has given 1½ pages to promoting WLD and the Summer edition will carry articles on the ways that WLD was marked throughout the UK.

Contact: Chris Maker (Director) – e-mail: Chris@lupusuk.org.uk
Website: www.lupusuk.org.uk

Hibbs Lupus Trust

The Hibbs Lupus Trust will be promoting World Lupus Day through our facebook & twitter profiles whilst working with local businesses & supporters to raise awareness and funds through a range of activities on Thursday 10th May.

Visit our website www.hibbslupustrust.org/world-lupus-day for more information and to get involved

St. Thomas Lupus Trust

The Joy of Living Concert
Thursday May 10th (World Lupus Day)

A celebration of all things lovely in life (and World Lupus Day!!). We often get overwhelmed by illness, sadness and general day to day worries so come for a respite from all of this and have a relaxing evening of great, fun entertainment. Suitable for all the family! Bring anyone along that needs a bit of cheering up as it's guaranteed to work!

Guy’s Chapel, Guy’s Hospital. Gates for access in St. Thomas Street. Close to London Bridge tube station.

Concert commences 7pm, doors open 6.30pm. Concert approximately an hour and a half long.

Performances include: Dan Clews, Laura Cusack, Barbara Kelly & Carla Maney, Jimmy Lam, Pupils of St Peter’s School Eaton Square, Magdalene Chan & ZHL Strings.

Readers include: Lynn Faulds Wood & Annie Fowler

Limited numbers so please get tickets early. Tickets in advance from our shop here. Adults: £6.00 Child (ages 3 to 16) : £3 (including postage). Children under 3 are free. Tickets are nonrefundable.

On the door (cash only and subject to availability) Adults: £9 Child: £4

Contact: Angie Davidson
Website:www.lupus.org.uk
Email: fundraising@lupus.org.uk