Activities around the Globe
We invite all lupus organizations worldwide to send the Lupus Foundation of America information about the activities they will sponsor in celebration of World Lupus Day 2009. Please include as much detail as you wish in these descriptions, and add photos at a later day if you wish to do so. In order to have your activity listed, contact the Lupus Foundation of America with the name, date, and time of the event, as well as the name and location of your organization.
The LFA will post the information you provide on this page as it is received.
IMPORTANT! Please include email contact information for the appropriate person in your organization should another lupus group, the media or any other interested party want to contact you for more information about these activities. ALSO, if you chose to send photos, each organization must inform participants about how the photos will be used and obtain any permission required of the individuals whose pictures would be posted on the World Lupus Day website.
Check out pictures from lupus organizations around the world as they celebrated World Lupus Day 2009.
Activities for 2009 are listed below.
Argentina -- Asociación Lupus Argentina - ALUA
Event: The Asociación Lupus Argentina - ALUA will be hosting the 38º Medical Symposium Open to Community about differents aspects to lupus especially to patients, families, medical and social workers, with free distribution of instructional brochures about the event and WLD buttons. This event will be declared of interest by the Legislative Chamber of Deputies. In addition, a Commemorative Postmark WLD 2009 (PDF) from the Official Mail of the Argentine Republic will go into circulation from May 10 until December 31. Read the first person account (in English, PDF, and in Spanish, PDF) of Teresa Cattoni, who attended the event.
Date: 2009
Location: Buenos Aires - Argentina : Auditorio del Banco de la Ciudad de Buenos Aires (Esmeralda 660 Piso 3º - CABA)
Website: www.alua.org.ar/
Contact: Email at info@alua.org.ar.
Belgium -- Liga Voor Chronische Inflamitoire Bindweefselziekten
Event: WLD 2009 again was a huge success in Belgium. After our great meeting in Oostende, at the Belgian sea coast, in 2008, we decided to visit the same place this year. The big load of tourists would help to spread the word about lupus. We handed out over 3000 leaflets with info on lupus and our organisation. In a tent, people could get more info if wanted, and have a talk with patient experts. Several children were dressed up as little wolfs that drew attention during our parade. With blue and white umbrella’s we caught the eye of many people at the seaside, and during a huge ‘mexican wave’ we had the greatest fun! Banners with information on lupus and our website were carried along, so everyone now knows where to find us. The collaboration of the French speaking and Dutch speaking organisations worked very well, and we already made plans to continue our working together in 2010. Everything for the good cause! World Lupus Day 2009 was a big success; check it out on YouTube! http://www.youtube.com/watch?v=nU8QR9K1u9c
Date: 2009
Location: Oostende, at the Belgian sea coast
Website: www.cibliga.be/
Contact: secretariaat@cibliga.be
Brazil -- Association LOBA (Lúpicos Organizados da Bahia)
Event: A walk for lupus in some streets of our city and a talk with lupus specialists that will be held at Hospital Santa Izabel, referral center for SLE.
Date: 2009
Location: Salvador, Bahia, Brazil
Website: www.santacasaba.org.br/reumatologia/artigos/wmview.php?ArtCat=3
Contact: Jacira Coceição, President of the association LOBA (Lúpicos Organizados da Bahia) at jaciraconceicao_lupicosdabahia@hotmail.com, or Dr. Santiago at mitter@svn.com.br
Canada -- Lupus Canada
Name of event: Walk a Block for Lupus
Date: 2009
Location: Communities all across Canada
Website: www.lupuscanada.org
Contact: Leanne Mielczarek, National Coordinator, Campaigns & Development, Lupus Canada. You can reach her at 1-800-661-1468 / 905-513-0004 x-224 or by email at leanne.mielczarek@lupuscanada.org.
Canada -- Lupus Foundation of Ontario
Name of event: Niagara KIDZ Walk for Lupus. Check out this article (PDF) about Naana and her ongoing efforts in Ajax to raise lupus awareness.
Date: Saturday, May 9, 2009
Location: Merritt Island, 60 East Main Street & Civic Square, Welland ON
Website: www.vaxxine.com/lupus
Contact: 905-894-4611 or 800-368-8377.
Canada -- Lupus Newfoundland & Labrador
Name of event: Walk a Block for Lupus
Date: 2009
Location: Depart from the City Hall of Mount Pearl at 2 p.m.
Website: www.envision.ca/members/templates/template4.asp?ID=3147
Contact: Jerry Payne at 709-772-2089 or 709-754-3059.
Canada -- Lupus Ontario
Name of event: Walk a Block for Lupus
Date: 2009
Location: Communities all across Canada
Website: www.lupusontario.org
Contact: Marni Schecter, Executive Director or Karen Furlotte, Office Coordinator, Lupus Ontario, 1-877-240-1099 / 905-415-1099 or by email at walkablock@lupusontario.org.
Canada -- Lupus Society of Manitoba Inc.
Name of event: Walk a Block for Lupus
Date: 2009
Location: Communities all across Canada
Website: www.lupusmanitoba.com
Contact: Kendra Gaede, Walk a Block Coordinator, 204-475-9676 or by email at kennygaede@hotmail.com.
Chile -- Agrupación Lupus Chile
Event: Panel discussion with a rheumatologist and a nephrologist
Date: Wednesday, May 6, 2009
Website: www.agrupacionlupuschile.cl/
Contact: 8519455 or by email at mrios@agrupacionlupuschile.cl.
Cyprus -- Cyprus League Against Rheumatism
Event: We decided to organize a reunion of our members and their relatives at 5 p.m. at the Voici La Mode Restaurant (Marks and Spencer) in Acropolis, Nicosia. The psychotherapist and volunteer of our Association, Spyroula David – Syrimi, will also join us for a "thinking positive" discussion.
Date: Sunday, May 10, 2009
Website: www.rheumatism.org.cy
Contact: 357-22428285 / 357-22428288 or by email at cyplar@cytanet.com.cy.
Germany -- Lupus Erythematodes Selbsthilfegemeinschaft e.V.
Name of event: LupusCrossing: Butterflies are Crossing the World
Event: Postcard fans around the globe can register on www.postcrossing.com in order to send and to receive "real" postcards from a randomly chosen other "postcrosser." Postcrossers are asked to send a butterfly card to my address to express their support for lupus patients across the world. You can read the lupus postcrossing blog entry here.
Date: Now thru May 2009
Additional WLD information: Learn more about German activities for WLD 2009
Website: www.lupus.rheumanet.org/
Contact: Simone Müller-Pretis at wuerzburg@lupus-rheumanet.org
Hungary -- Magyar Lupus Egyesület
Event: It will be a family day in Budapest, for people living with lupus, and their families and friends. In the morning, we will have patient presentations, and after lunch, we will have some performances from people living with lupus. At the end of the day, we will walk with umbrellas to celebrate this illness. Here, you can check out the pictures of the WLD celebration on an island in the Danube River.
Date: May 10, 2009
Website: www.sle.hu/
Contact: sleklub@vipmail.hu
Indonesia -- Care for Lupus - SDF
Event: A pop music album will be launched on May 9, and can be enjoyed by music lovers and public at large in Indonesia. Syamsi Dhuha Foundation (SDF), a non-profit organization which provides support to lupus patients, produced this album. This album is dedicated to increase public awareness of lupus,as well as to encourage public attention and caring to those suffering from Systemic Lupus Erythematosus (SLE) or lupus. You can view the press release (PDF) and the concert flier (PDF). You can also read a lupus article, written by Dian Syarief (PDF), which appeared in the Jakarta Post, a leading english newspaper in Indonesia.
Date: May 9, 2009
Website: www.syamsidhuhafoundation.org/
Contact: Dian Syarief at her mobile +6281320509446 or +62816709391, or end@cbn.net.id
Indonesia -- Yayasan Lupus Indonesia (YLI)
Event: There will be a lupus talk show on May 9. There will be a World Lupus Day ceremony on May 10. And there will be an ELPALA Walk For Lupus on May 16.
Date: Month of May
Website: www.lupusindonesia.org/
Contact: Ayu Bisono at ayufanani@cbn.net.id
Iran -- Lupus Foundation
Event: World Lupus Day celebration
Date: May 2009
Location: Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran
Website: www.rrciran.org or www.lupus.ir
Contact: Dr. M. Akbarian, Dr. S.T. Faezi, or Dr. M. Akhlaghkhah at +98(21)88220065 +98(21)88026956 or by email at iranlupus@yahoo.com
Ireland -- Cumann Cabhrach Lupus na hEireann
Event: The Irish Lupus Support Group will be hosting our Conference on 9th May 2009 in Carmichael Centre for Voluntary Group, North Brunswick Street, Dublin 7. from 2 pm - 4.30 pm. We will have a Medical Guest Speaker in attendance.
Date: May 9, 2009
Website: www.lupus.ie
Contact: irishlupus@iol.ie
Malaysia -- Malaysian SLE Association
Event: We're hosting an open house in our new office.
Date: May 10, 2009
Website: www.lupusmalaysia.org
Contact: pslempg@tm.net.my
Mauritius (Republic of) -- Lupus Alert
Event: World Lupus Day posters have been distributed throughout the island: hospitals, healthcare centres, social centres, surgeries, schools, and ministries of the government. On Sunday, May 10, Lupus Alert will organize a seminar with patients, friends and families at the Lupus Alert Drop-In Centre / Library. Two physicians will join us from 9 am to 3 pm for an open discussion on different aspects of lupus. We will display our new collection of books and magazines on lupus. A presentation of the work of Lupus Alert since the official launching in 2000, will be delivered. We will also use our Facebook page to post updates and encourage members to help spread awareness of lupus.
Date: May 10, 2009
Website: www.lupusalertmauritius.com
Contact: lupusalert@hotmail.com
Mexico -- Lupus Nuevo León Mariposa Roja, AC
Event: We have 5 conferences scheduled with renowned specialists, a 20+ year patient testimony, raffle and banquet. Here is a poster (PDF) for the Second Symposium to Commemorate World Lupus Day, titled "Nurturing the Mind, Body and Soul."
Date: May 23, 2009
Website: www.lupusnuevoleon.org.mx/
Contact: Janneke van den Heuvel at vp@lupusnuevoleon.org.mx
Netherlands -- Nationale Vereniging LE Patienten
Event: This year, a World Lupus Day poster is distributed in the country via our members. This poster is also sent to all the departments of rheumatology in the Dutch hospitals. We made a special poster for the libraries in all the big cities in the Netherlands, with a holder containing bookmarks for all the visitors. On these bookmarks the logo of World Lupus Day and information about our organisation and they have appropriate the shape of a butterfly. We hope to reach many people with this campaign. We also organized two World Lupus Day puzzle contests. One in our magazine for our members and one on our website for everybody. These contests close on May 10th. The winners receive a cheque of € 50,00 and a nice NVLE gadget.
Date: May 10, 2009
Website: www.nvle.org
Contact: Janneke van den Heuvel at secretaris@nvle.org
New Zealand -- Lupus Trust of New Zealand
Event: Lupus World Day coincided with Motherss Day this year, so we celebrated the day on Saturday 9th May. To raise awareness for our cause, we had a table set up at St. Luke's Shopping Mall in Auckland from 10 am till 2 pm. It was a successful day, with a number of people requesting information packs for themselves or a family member. We also raised funds for our Trust through Donations and selling embroidered facecloths & printed pens.
Date: May 9, 2009
Website: www.lupus.org.nz/
Contact: lupusnz@xtra.co.nz
Norway -- Lupusgruppen i NRF
Event: The Norwegian Lupus group will be hosting our 1. World Lupus Day conference on 9th May 2009 in Oslo. At Rikshospitalet a part of Oslo University Hospital from 11 am- 17 pm. A one day conference about different aspects that are related to lupus, as well as social, medical and psycological items.
Date: May 9, 2009
Website: www.sle.no/
Contact: flavoll@online.no
Spain -- Federación Española de Lupus (Felupus)
Event: As everyear we are going to celebrate World Lupus Day with a national congress in Malaga city, which is exactly in the Costa del Sol in the South of Spain. This is our 8th National Lupus Congress and it's coorganized by the Spanish Lupus Federation and the Association of Lupus in Málaga. We have one and a half day of conferences about different aspects that are related to Lupus, as well as social, medical and psycological items. This year we want to discuss about new diagnosed Lupus people, Lupus in men, elder and children, pregnancy, investigation, new treatments, blood test and the quaility of life for people with Lupus. We have prepared also an interesting social activities, including a tourist sitghseen of the city, a lunch and a gala dinner. We hope more than 300 attendants.
Date: May 8-9, 2009
Website: www.felupus.org
Contact: felupus@felupus.org
Spain -- Asociación Cde Lupus de Aragón (ALADA)
Event: We will be giving information about lupus and our association to the general population on Plaza de España, next to Diputación Provincial, from 10.30 to 13.30 to celebrate World Lupus Day.
Date: May 9, 2009
Website: www.gratisweb.com/alada/index.htm
Contact: asociaciondelupusdearagon@gmail.com
Spain -- Asociación Catalana de Lupus Eritematoso Generalizado (ACLEG)
Event: This year is the first one that we organize a Walk for Lupus in the city of Barcelona to celebrate World Lupus Day. We will start on Paseo de Gracia situated in La Pedrera, Provenza Street, then we will go to Diagonal Avenue direction to Sagrada Familia. There we will read the World Lupus Day International Proclamation.
Date: May 10, 2009
Website: http://acleg.entitatsbcn.net
Contact: acleg@hotmail.com
Spain -- Asociación de Lupus de Almería (ALAL)
Event: ALAL will have a presentation at the Almeria University in Spain. Here is a flier (PDF, in Spanish) of the event.
Date: May 5, 2009
Website: www.alal.es
Contact: alal@alal.es
United Kingdom -- LUPUS UK
Event: At 12:30 p.m., email or text the following message to 10 people you 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 No. 1051610 www.lupusuk.org.uk" Or, you can view a flier (PDF) of the text message.
Date: Sunday, May 10, 2009
Website: www.lupusuk.org.uk
Contact: Christine Watkins at christine@lupusuk.org.uk
United States -- Lupus Foundation of America / National Office
Event: This year, the LFA will use social media to help raise awareness about lupus. Here are some examples of what we're doing.
Facebook
Help the LFA spread the word about World Lupus Day. Ask your friends and family to change their Facebook status for the day before, and the day of, World Lupus Day (May 9-10). Below is a suggested status you can use on your Facebook page.
"YOUR NAME encourages family and friends to raise awareness about lupus by supporting World Lupus Day on May 10. http://www.worldlupusday.org"
You can also join the LFA's cause in Facebook.
Twitter
If you have a Twitter account (LFA does -- http://twitter.com/LupusOrg) and are joining us for World Lupus Day, you can "tweet" your World Lupus Day experience. You might want to post updates such as "walking to support lupus" or "texting friends to raise lupus awareness." Here is a suggested "tweet."
"Support World Lupus Day on May 10. Tell us what you’re doing to raise awareness. http://www.worldlupusday.org"
Send an eCard to 10 friends
Send an informative and interactive eCard to educate others on how lupus affects the body.
Lupus Awareness Month
May is Lupus Awareness Month, one of several awareness campaigns promoted by the Lupus Foundation of America (LFA) to increase the visibility of lupus. LFA encourages you -- and your family and friends -- to help spread the word about lupus. Your way. Learn more about LFA's lupus awareness efforts.
Date: Sunday, May 10, 2009 / Month of May
Website: www.lupus.org
Contact: Sara Chang at chang@lupus.org