Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 The following alphabetical list of lupus organizations is provided to assist our international visitors in finding local support and information. ARGENTINA Asociación Lupus Argentina (ALUA) c/o G. Cattoni Avenide Corrientes 1584 Piso 3 (1042) Ciudad Autonoma de BS. As. Argentina Phone: 54-11-4371-4444 E-mail: jinfo@... ------------------------------------------------------------------------------ AUSTRALIA Fullarton Lupus/Scleroderma Group c/o Arthritis Foundation of S. Austral 1/202 Glen Osmond Road Fullarton, South Australia 5063 Australia Phone: 08-8379-5711 Fax: 08-8379-5707 E-mail: arthritissa@... Internet: www.cibliga.com Kenmore Queensland Lupus Australia Queensland, Inc PO Box 974 Kenmore Queensland 44069 Australia Phone: 07-3878-9553 Fax: 07-3878-9557 E-mail: lupusq@... Melbourne Lupus Australia Foundation Level 2, 247 Flinders Lane Melbourne 3000 Australia Phone: 03-613-9650-5348 E-mail: laf@... Internet: www.lupus.com.au New South Wales Lupus Association of NSW, Inc. PO Box 89 North Ryde New South Wales 1670 Australia Phone: 61-2-9878-6055 1-800-802-088 Fax: 61-2-9879-6049 Perth Lupus Group of Western Australia, Inc. C/- Royal Perth Hospital PO Box x2213 Perth, Western Australia 6847 Australia Phone: 08-9224-3144 Fax: same E-mail: lupus@... Internet: www.lupuswas.com.au Tasmania upus Assn of Tasmania, Inc. Marilyn Rosevear, Secretary PO Box 639 Launceston, Tasmania 7250 Australia Phone: 03-6331-9940 Fax: 03-6331-9110 E-mail: lupustas@... ------------------------------------------------------------------------------ BELGIUM Bruxelles Association Lupus Erythemateux 62/19 B Avenue des Jardin Bruxelles B-1030 Belgium Phone:32-2-726-51-41 E-mail: maria.toledo@... Houthalen CIB-Liga VZW Chronische nflammatoire Bindweefselziekten Bijendries 20 Houthalen 3530 Belgium Phone: 32-11-72-79-52 Fax: same E-mail: arthritissa@..., ausecr.cibliga@... Internet: www.cibliga.com ------------------------------------------------------------------------------ BERMUDA Lupus Association of Bermuda c/o Corynne P.O. Box HM 1291 Hamilton HM FX Bermuda E-mail: cbailey@... ------------------------------------------------------------------------------ BRAZIL Belo Horizonte Lupus Online c/o Denis Morado R. Trompowski 1006/502 Belo Horizonte 30430-060 Brazil Rio de Janeiro SOS Lupus Group Rio c/o Buarque Hospital Univ. Brigadeiro Trompowsky, s/no Cidade Uni Ilha do Fundao, Rio de Janeiro Brazil Phone: 212-1562-2567 Fax: 0312-1562-2567 Sao o Lupus Society of Brazil Cristiano A. Zerbini, MD Rua Estela Sezefredo, 59 Sao o, SP 05415 Brazil ------------------------------------------------------------------------------ BULGARIA LFA Chapter opolis Dr. Emilie Spassova 2 Yosif Shniter Street Plovdiv 4000 Bulgaria ------------------------------------------------------------------------------ CANADA Calgary Lupus Society of Alberta Suite 200 1301 - 8th Street S.W. Calgary, Alberta T2R 1B7 Canada Phone: Fax: E-mail: lsaservice@... Charlottetown Lupus PEI PO Box 23002 Charlottetown PE C1E 1Z6 Canada Phone: Fax: E-mail: bargri@... Hamilton Ontario Lupus Society of Hamilton 20 Hughson Street S Suite 600A Hamilton Ontario L8N 2A1 Canada Phone: Fax: same E-mail: info@... Markham Ontario Ontario Lupus Association 590 Alden Road Suite 204 Markham, Ontario L3R 8N2 Canada Phone: Fax: E-mail: ola@... Lupus Canada 18 Crown Steel Dr. Suite 209 Markham, Ontario L3R 9X8 Canada Phone: Fax: E-mail: lupus@... New Brunswick Lupus New Brunswick Nacy Votour 23-13 Ivan Court Moncton New Brunswick E1C 8T3 Canada Phone: Fax: same E-mail: lupins@... Nova Scotia Lupus Society of Nova Scotia PO Box 38038 Dartmouth, Nova Scotia B3B 1X2 Canada Phone: Fax: E-mail: lupussociety@... Ridgeway Ontario Lupus Foundation of Ontario Box 687 294 Ridge Road North Ridgeway Ontario L0S 1N0 Canada Phone: Fax: E-mail: lupusont@... Saskatchewan LE Society of Saskatchewan Box 888, Royal University Hospital 103 Hospital Drive Saskatoon Saskatchewan S7N 0W8 Canada Phone: E-mail: less@... Vancouver BC Lupus Society 200-1645 W 7th Avenue Vancouver Bristish Columbia V6J 1S4 Canada Phone: Fax: E-mail: bclupus@... Winnipeg Lupus Society of Manitoba 105-386 Broadway Winnipeg MB R3C 3R6 Canada Phone: Fax: same E-mail: lupus@... ------------------------------------------------------------------------------ CHINA Singapore Lupus Association of Singapore Balestier Estate P.O. Box 460 913202 Singapore China Phone: 6254-9130 Fax: 6254-8701 E-mail: lupusas@... National Arthritis Foundation of Singapore Dr. Feng Pao Hsii 336 Street #06-302 New Bridge Center 0105 Singapore China ------------------------------------------------------------------------------ ECUADOR Fundacion Lupus Eritematoso rio H. Solouzans de Gumsly Checa 124 y de Agosto Quito Ecuador ------------------------------------------------------------------------------ FINLAND SLE-rhyma c/o The Finnish Rheumatism Association Iso Roobertinkatu 20-22 A Helsinki FIN-00120 Finland Phone: 358-9-4761-5601 Fax: 358-9-642-286 E-mail: info@... ------------------------------------------------------------------------------ FRANCE Reu de Crimee Association Francaise du Lupus et Autres Maladies auto.immunes Reu de Crimee 4 - AFL + Paris F-75019 France Phone: 33-1-42-02-23-20 Fax: same E-mail: lupus.plus@... Rue de Rocroy LUPUS France Rue de Rocroy 7 Paris F-75010 France Phone: 33-1-45-26-33-27 Fax: same ------------------------------------------------------------------------------ GERMANY urt *Deutsche Rheuma-Liga Hessen, L.E. Arbeitskreis ATTN: Birgitt Klatt Kohlbrandstrasse 27 furt D-60385 Germany Wuppertal Lupus Erythematodes Selbsthilfegemeinschaft e.V. Doeppersberg 20 Wuppertal 42103 Germany Phone: 49-202-496-87-97 Fax: 49-202-496-87-98 E-mail: lupus@... leshg@... ------------------------------------------------------------------------------ HUNGARY Magyar Lupus Egyesulet Adoszan 18157860-1 Epres sor 4 Budapest 1152 Hungary Phone: 36-1-306-6433 Fax: 36-1-271-0307 E-mail: hslegabi@... ------------------------------------------------------------------------------ ICELAND KJARNINN ahugaliopuru Lupus Armuli 5 Reykjavik IS-108 Iceland Phone: 354-530-36-00 Fax: 354-553-07-65 Internet: www.gigt.is ------------------------------------------------------------------------------ INDONESIA Yayasan Lupus Indonesia (YLI) c/o Ayu Bisono Jalan Tanah Mas II/H87 Pulo Mas Jakarta 13210 Indonesia Phone: 62-21-47868336 Fax: same E-mail: yli_indo@..., ayu@... ------------------------------------------------------------------------------ IRELAND Col Cork *Irish Lupus Support Group Ltd Cork Branch 3, Ard Na Greine Evergreen Road Co. Cork Ireland Phone: 353-21-496-1375 Dublin Cumann Cabhrach Lupus na hEireann Carmichael Center North Brunswick Street Dublin 7 Ireland Phone: 353-1-872-4518 Fax: 353-1-284-32-94 E-mail: irishlupus@... Northern Ireland North Ireland Lupus Group 10 Downview Road, Greenisland Carrickfergus Co. Antrim BT38 8RX Northern Ireland Phone: 028-9086-6606 Fax: 028-9086-0784 E-mail: lupus.ni@... ------------------------------------------------------------------------------ ISRAEL Irgun Ha-Lupus 9e-Yisrael Institute of Clinical Immunology POB 14103 Tel Aviv 61141 Israel Phone: 972-3-695-5357 E-mail: kohi@... ------------------------------------------------------------------------------ ITALY Bari Vena Gino Antoniao Clinica Dermatologica Univers. Policlinico-P za Giulio Cesare Bari 70100 Italy Genova Albert Marmont Divisione de Ematologica Ospedale S. o XIII U.S.L Viale Benedetto XV, 10 Genova 16132 Italy Piacenza Gruppo Italiano Per La Lotta Contro Il Lupus Eritematoso Sistemico Via Arbotori. Piacenza 14-29100 Italy Phone: 00-39-523-753643 Fax same E-mail: rmuc ------------------------------------------------------------------------------ MALAYSIA Khuala Lumpur Malaysian Society Rheumatology Dr. Gek Liew Chin 26 Persiaran Jelutong Damansara Heights Khuala Lumpur 50490 Malaysia Selangor D.E. Persatuan SLE Malaysia c/o Dr. Wo Chee Yuen 934 1st Floor Jalan 17/38 Petaling Jaya Selangor D.E. 46400 Malaysia Phone: 603-7957-7672 Fax: 603-7957-0407 E-mail: pslem@... ------------------------------------------------------------------------------ MALTA Lupus Support Group St 's Garden IX-Xwieki L/o Gharghur Malta, GC Phone: 356-21-370-234 Fax: 356-21-377-402 E-mail: elizian@... ------------------------------------------------------------------------------ MEXICO Guadalajara, Jalisco Lupus Fundacion de Mexico c/o Dr. J. Humberto Orozco-Medina Club de Lupus Centro Medico de Occiden Pedro Buezeta 870-B, Tavascos 3469-306 Guadalajara, Jalisco 44660 Mexico Phone: San Potosi LUPAC Privada Cordillera Occidental 790 Lomas 4A Seccion San Potosi, S.L.P. 78216 Mexico Phone: E-mail: lupusac@... ------------------------------------------------------------------------------ MOROCCO Assoc. of Lupus Victims of Morocco Akhlij Fatna 40 Rue des Alpes Maarif Casablanca Morocco ------------------------------------------------------------------------------ NEW ZEALAND Lupus Trust of New Zealand PO Box 35 233 Browns Bay Auckland New Zealand Phone: 09-473-8778 E-mail: honstuck@... ------------------------------------------------------------------------------ NEWFOUNDLAND Lupus Newfoundland & Labrador P.O. Box 8121 Stn A Kenmount Road St. 's A1B 3M9 Newfoundland Phone: E-mail: lupusnfld@... ------------------------------------------------------------------------------ NIGERIA Lupus Awareness Assn Nigeria Attn: Agu Emmanuel Elochukwu P.O. Box 30, Owelli Awgu Local Gov't Area Enugu State Nigeria E-mail: laanigeria@... ------------------------------------------------------------------------------ NORWAY Lupus Foreningen i NRF Huldresvadet 17 Norfjord N-6770 Norway Phone: 47-57-86-08-86 ------------------------------------------------------------------------------ PARAGUAY Vivan Ayala Casill de Correo 2031 Asuncion Paraguay ------------------------------------------------------------------------------ PHILIPPINES Manilla Tito Torralba, M.D. Arthritis Fdn. of Philippines Santo Tomas Univer. Hospital Room 216-B, Espana St. Manila Philippines Lupus Foundation of the Philippines, Inc. c/o Santo Tomas University Hospital Room 216-B, Espana Street Manila Philippines E-mail: marilyn.robles@... ------------------------------------------------------------------------------ POLAND Polska Fundacja Tocznia " Motyl " Agnieszka Plonkowska - Gronert Rynek - Ratusz 11/12 Wroclaw 50-106 Poland Phone: 48-71-344-18-66 48-71-342-17-04 Fax: same E-mail: biuro@... ------------------------------------------------------------------------------ PORTUGAL Lisboa Associacao de Doentes com Lupu Praca Francisco, Sa Carneiro No. 11 2./Esq., Lisboa 1000 Portugal Phone: 351-1-846-44-83 E-mail: associacao.lupus@... Prof. Viana De Queiroz Universidade de Lisboa Hospital Universitario de Santa Av. Prof. Egas Moniz Lisboa 1699 Portugal ------------------------------------------------------------------------------ PUERTO RICO a Apoyo-L c/o Ortiz Del Carmen #7 a 00795 Puerto Rico Phone: Levittown Puerto Rico Lupus Support Group PO Box 50817 Levittown 0950 Puerto Rico San German Grupo Apoyo Pacientes Lupus Ortiz Egida Concepcion 410 San German 00683 Puerto Rico ------------------------------------------------------------------------------ ROMANIA Clinica Dermatologica Cluj-Napoca Dr. Nicolae Maier Str. Clinicilor Nr. 3 Cluj-Napoca 3400 Romania ------------------------------------------------------------------------------ SOUTH AFRICA Johannesburg Lupus Support of Johannesburg Mrs. Helena Hurwitz PO Box 85316 Emmarentia Johannesburg 2029 South Africa Lupus Support Group Network c/o Arthritis Foundation STVL Branch P.O. Box 87360, Houghton Johannesburg 2041 South Africa Somerset West Lupus Group of South Africa c/o Yvonne Bowker 11 Firmount Road Somerset West 7129 South Africa ------------------------------------------------------------------------------ SPAIN Algeciras-Cadiz Associacion de Enfermos de Lupus de la Provincia de Cadiz (AELCA) Aptdo. De Correos 1.009 de Algeciras Algeciras-Cadiz 11207 Spain Phone: 956-57-43-24 E-mail: lupuscadiz@... Alava *ADELES - Asociacion de Ayuda a los Enfermos de Lupus C/Pintor Vicente Abreu No 7-Ofc. 2A Vitoria-Gasteiz, Alava 01008 Spain Asturias Asociacion de Lupicos de Asturias (ALAS) C/ Instituto n 17, 2-A Gijon, Asturias 33201 Spain Phone: 985-17-25-00 Fax: same E-mail: lupusasturias@... Barcelona Spanish SLE Aid Group Dr. p Font Hospital Clinico Dept. Medicina Interno Villarroel 170, Barcelona 08036 Spain Catalunya Association of L.E. Dra. Montserrat Hosp. Santa Creu i Sant Pau Ave. Sant A.M. Claret 167 Barcelona 08025 Spain Granada Asociacion Granadine de Lupus (LUPUS GRANADA) Parque de las Infantas. Edif. Carolina loc 2 (Fed. Prov. Minus. Fisicos) Granada 18006 Spain Phone: 958-81-91-18 E-mail: lupus-granada@... Cordoba Asociacion Cordobesa de Lupus (LUPUSCOR) C/ Montessori s/n Fed. Asoc. Minusv. Fisicos Cordoba 14011 Spain Phone: 605-632-989 E-mail: cordoba@... La Coruna Asociacion Gallega de Lupus (AGAL) Centro Asociativo Sabell Plaza Eteban Lareo 17, bajo La Coruna 15008 Spain Phone: 981-57-39-31 E-mail: lupusgalicia@... Las Palmas de Gran Canaria Asociacion Canaria de Lupus (ACALU) Urb. El Canon n 62 Tasira Las Palmas de Gran Canaria 35017 Spain Phone: 617-88-50-44 E-mail: acalu@... Logrono Asociacion de Lupus La Rioja (LUPUS RIOJA) C. San Prudencio 4, 1 Izda Logrono, La Rioja 26004 Spain E-mail: lupusrioja@... Malaga Asociacion Malaguena de Lupus (ALA) C/ Lagunillas 25 locales 3 y 4 Malaga 29012 Spain Phone: 952-26-65-04 Fax: same E-mail: lupusmalag@... Asociacion Espanola de Lupus c/o ez de la No. 157, 1oB; Esc. Drcha. Malaga E-29010 Spain Federacion Espanola de Lupus c/o Isabel Lagunillas no 25, locales 3 y 4 Malaga 29012 Spain Phone: 952-25-08-26 Fax: same E-mail: felupus@... Pamplona Asociacion de Enfermos de Lupus de Navarra (ADELUNA) C. Abejeras n 43, 4B Pamplona 31007 Spain Phone: 948-23-51-46 Renteria Guipuzcoa Asociacion de Lupus de Guipuzcoa (ADELES-GUIPUZCOA) c. San Marcos, n 5-5 A Renteria Guipuzcoa 2.100 Spain Phone: 943-52-37-68 Salamanca Asociacion Salmantina de Lupus (ASALU) Avda Lasasile n 114 Salamanca 37005 Spain Phone: 923-26-94-24 E-mail: jumar1980@... Santander Asociacion Lupus de Cantabria c/O General Davila, 89, 1 Santander 39006 Spain Phone: 942-23-85-01 E-mail: alupus@... Sevilla Asociacion de Lupicos de Sevilla (ALUS) C/O Ronda de Capuchinos, 2, Loc. 16 E 2 Sevilla 41003 Spain Phone: 954-53-11-55 E-mail: alusevilla@... Valencia Asociacion Valenciana de Afectados de Lupus (AVALUS) C. Alboraya n 18, puerta 13-B Valencia 46010 Spain Phone: 676-05-97-97 E-mail: lupusvalencia@... Zaragoza Grupo de Ayuda Mutua Enfermos de Lupus Zaragoza (GAMELUZ) C. Paseo Pamplona n 17 Principal Derecha Zaragoza 50004 Spain Phone: 976-21-83-38 Fax: 976-15-85-07 E-mail: julia777@bigfoot .com or cjz@... ------------------------------------------------------------------------------ SWEDEN SLE/Sjogrenradet - Rheumatikerforbundet Sandbackavagen 32L Umea S-903 46 Sweden Phone: 46-90-13-00-65 Fax: 46-739-164683 E-mail: bettan.forsmark@... ------------------------------------------------------------------------------ SWITZERLAND Adetswil Schweizerische Lupus Erythematodes Vereinigung (SLEV) Chatzetobeli 2 Adetswil CH-8345 Switzerland Phone: 41-1-939-19-83 Fax: 41-1-830-77-00 E-mail: e.dubach@... Uesslingen Swiss Lupus Group a Quenson Oberdorfstrasse 15 Uesslingen 8524 Switzerland ------------------------------------------------------------------------------ THE NETHERLANDS Bisonspoor Nationale Vereniging LE Patien 3605 LV Maarssen Bisonspoor 3004 The Netherlands Phone: 0346-552-401 E-mail: info@... Den Haag SLE-Lupus Projects Postbus 64807 2506 CE Den Haag The Netherlands ------------------------------------------------------------------------------ UK British Isles Manx Lupus Support Group c/o Gilmour, Secretary 76 Watterson Lane , Isle of Man British Isles IM2 6NA UK E-mail: gag@... Essex ELEF c/o LUPUS UK St House, 27-43 1 Eastern Road Romford, Essex RM1 3NH UK Phone: 44-0-1708-731-251 Fax: 44-0-708-731-252 E-mail: headoffice@... Rookery Nook Attn: Cheryl Marcus 17 Nomkhams Dr. Woodford Green, Essex IG8 0LG UK LUPUS UK St House, 27-43 1 Eastern Road Romford, Essex RM1 3NH UK Phone: 44-0-1708-731-251 Fax: 44-0-708-731-252 E-mail: headoffice@... ------------------------------------------------------------------------------ UNITED STATES New Jersey Lupus Association of Cebu c/o May Malingin 844 Roosevelt Ave. Secaucus, NJ 07094 USA New York Lupus Association of Bermuda c/o Corynne 140-35 Queens Blvd Jamaica, NY 11435 USA Washington D.C. Lupus Foundation of America, Inc. 2000 L Street NW Suite 710 Washington, D.C. 20036 USA Phone: Fax: E-mail: info@... ------------------------------------------------------------------------------ WEST INDIES Barbados The Hope Foundation Barbados Attn Weir 112 First Ave., Pelican Husband Gardens St., Barbados West Indies Kingston 10 Lupus Foundation of Jamaica c/o Lamia Lee PO Box 560 Kingston 10, Jamaica West Indies Phone: Trinidad Lupus Society of Trinidad & Tobago, c/o Skin Clinic General Hospital Charlotte Street Port of Spain, Trinidad West Indies If your group is listed incorrectly, please contact us with the correct information. This list last updated April 6, 2004 http://www.lupus.org/support/lupusgroups.html donadagohvi, night spirit http://webpages.charter.net/joyce.d/HOME_PAGE.html [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 2 Date: Thu, 6 May 2004 02:03:01 -0400 From: " svnoyi adanvdo " Subject: WORLD LUPUS DAY - MAY 10TH 2004 WORLD LUPUS DAY - MAY 10TH 2004 Preliminary announcement Progress is now envisaged such that an Announcement should be made about World Lupus Day during the International Lupus Congress, New York, in May 2004. We have to thank the Lupus Foundation of America (LFA) who, working with the Pfizer Foundation, have set the international objectives for acceptance. A Steering Committee is being established to see the project through, where at least two international health organisations (eg W.H.O) should give their approval. International medical organisations and all (currently) 67 lupus organisations across the world will be requested to 'come on board'. LUPUS UK will be having positive input! The Steering Committee met in London in January to progress the multiple issues involved in ensuring the success of the project and representatives from the Far East, the US, Canada, Australia and a number of European countries were present. Delegates were conscious that launching World Lupus Day gives world wide visibility to the disease and drawing in national and international organisations for support further strengthens the lupus message. The Whole World confronting lupus on a designated day annually - wonderful! Do you remember reading about the idea in News & Views some three years ago! http://www.lupusuk.com/worldlupusday.htm ------------------------------------------------------------------------------ MAY 10th, 2004 IS WORLD LUPUS DAY The first-ever World Lupus Day observance will occur on Monday, May 10, 2004, to coincide with the 7th International Congress on Systemic Lupus Erythematosus (SLE) and Related Conditions. World Lupus Day will focus on the need for improved patient healthcare service, increased research into the causes of and a cure for lupus, enhanced physician diagnosis and treatment of lupus, and better epidemiological data on lupus globally. EXAMPLES OF IMPORTANT DISPARITIES Lupus is three times more common in black women than in white women. It is also more common in women of Hispanic/Latina, Asian, and American Indian descent. Black and Hispanic/Latina women tend to develop symptoms at an earlier age than other women. African Americans have more severe organ problems, especially with their kidneys. Between 1979 and 1998, death rates from SLE increased nearly 70% among black women between the ages of 45 and 64 years. Possible reasons include an increasing incidence of SLE, later diagnosis, less access to health care, less-effective treatments, and poorer compliance with treatment recommendations. Each year during the study period, death rates were more than five times higher for women than for men and more than three times higher for blacks than for whites. FOR MORE INFORMATION Eliminate Disparities in Lupus Lupus News Lupus Fact Sheet Trends in Deaths from Systemic Lupus Erythematosus --- United States, 1979--1998 Executive summary of the Investigation of Systemic Lupus Erythematosus in Nogales, Arizona Federal Citizen Information Center Systemic Lupus Erythematosus Medline Plus: Lupus Definition & Images National Institute of Arthritis & Musculoskeletal & Skin Diseases (NIAMS) Handout on Health: Systemic Lupus Erythematosus Lupus: A Patient Care Guide for Nurses & Other Health Professionals The Many Shades of Lupus National Institute of Neurological Disorders and Stroke (NINDS) Neurological Sequelae of Lupus Information Page National Kidney & Urologic Diseases Information Clearinghouse (NKUDIC) Lupus Nephritis National Women's Health Information Center Lupus Alliance for Lupus Research American Autoimmune Related Diseases Association American College of Rheumatology Arthritis Foundation Black Women’s Health Understanding Lupus The Lupus Foundation of America (LFA) World Lupus Day " Someone You Know Has Lupus " Campaign Statistics about Lupus SLE Foundation Get your FREE personalized email signature at My Mail Signature! 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