Overview on patient organizations across Europe

Patient Organizations in Europe

Transnational

CML Advocates network
Website: http://www.cmladvocates.net

E-mail: info@cmladvocates.net

Austria

Myelom- und Lymphomhilfe Österreich
Website: http://www.lymphomhilfe.at/

E-mail: info@myelom.at

Contact person: Prim. Univ. Prof. Dr. Heinz Ludwig
Adress: Satzgasse 5, 7052 Müllendorf, Austria
Phone: 0043 (0) 1 / 49150 – 2101

E-mail: heinz.ludwig@myelom.at

Bulgaria

Association of People Suffering from Chronic Myeloid Leukemia
A patient organization in Bulgaria for CML patients.

Website: http://www.cml.zdrave.info/

Phone: 0899 123 999, 0888 202 145
E-mail: hml@abv.bg

Croatia

Croatian Association of Leukemia and Lymphoma Patients
HULL Zagreb

Website: http://www.hull.hr

Contact person: Krunoslav Cigoj
Address: Trg hrvatskih velikana 2/II, 10 000 Zagreb, Croatia
Phone: +385 1 48 73 561
Mobile: +385 91-4873 561

E-mail: hull@zg.t-com.hr

Contact person: Boris Labar, MD, PhD, Associate Professor
Address: Clinical Hospital Center Zagreb, Dept. of Medicine, Div. of Hematology, Kispaticeva 12, HR-10000, Zagreb, Croatia
Phone: +385 1 23 88 644
Fax: +385 1 24 21 892

E-mail: boris.labar@inet.hr

Czech Republic

Lymfom Help
Patient organization in Czech Republic.

Website: http://www.lymfomhelp.cz/

Adress: LYMFOM HELP, o.s., Arménská 1374/14, Praha 10 – Vršovice
Phone: +420 724 370 065

E-mail: info@lymfomhelp.cz/
Diagnoza CML
Patient organizsation for CML patients, located in the Czech Republic

Website: http://diagnoza-cml.cz/

Contact person: Jana Pelouchová (předsedkyně sdružení)
Adress: ÚHKT, U Nemocnice 1, 128 20 Praha 2, Czech republic
Telefon: 728 308 360

E-mail: janapel@centrum.cz

Estonia

Estonian Leukaemia Patients Society
Eesti Leukeemiahaigete Liit. Language: estonian

Website: www.leukeemia.ee

Adress: Tallinna 22, 71001 Viljandi, postkast 9, Estonia

E-mail: info@leukeemia.ee

Europe

European Cancer Patient Coalition
Website: http://www.ecpc-online.org

Adress: ECPC Head Office, Oosterhaven 29, 1671 AB Medemblik, The Netherlands
Phone: +31 30 296 74 66
Fax: +31 30 296 74 39

E-mail: info@ecpc-online.org

Executive Director: Patricia Huijbregts
E-mail: patricia.huijbregts@ecpc-online.org
Administrator: Daniëlle Brouwer
E-mail: danielle.brouwer@ecpc-online.org

Head of EU Policy: Hildrun Sundseth
Adress: Dreve de Nivelles, 99, 1150 Brussels, Belgium
Phone: +32 2 772 6165
Fax: +32 2 772 6135
E-mail: hildrun.sundseth@ecpc-online.org

France

Association Laurette Fugain
Information from and for leukemian patients in France.

Website: http://www.laurettefugain.org/

Adress: Lot n° 1674 - 101 rue de Sèvres, 75279 PARIS cedex 06

E-mail: joycecoquinos@laurettefugain.org
France Federation Leucemie Espoir
La Fédération Leucémie Espoir (FLE) est une association de Vie et d’Espoir, tournée vers l’avenir pour apporter aide morale, matérielle et soutient aux malades et à leur famille.

Website: http://www.leucemie-espoir.org/

E-mail: a.civray@leucemie-espoir.org
France Lymphome Espoir
Patient organisation located in France

Website: http://www.francelymphomeespoir.fr/

Adress: 1 avenue Claude Vellefaux, 75475 Paris cedex 10 - France
Phone: 0492031000

E-mail: infos@francelymphomeespoir.fr

Germany

Deutsche Leukämie- und Lymphomhilfe e.V.
Website: http://www.leukaemie-hilfe.de/

Contact: Ralf Rambach (1. Vorsitzender)
Patient Advocat: Dr. med. Ulrike Holtkamp
Adress: Thomas-Mann-Straße 40, 53111 Bonn, Germany
Phone: +49 (0)228 - 33 88 9 200
Fax: +49 228 33 88 9 222

E-mail: info@leukaemie-hilfe.de
Leukaemie online
Leukämie-Online e.V. engagiert sich als unabhängige deutschsprachige Wissens- und Kommunikationsdrehscheibe zum Thema Leukämie - von Patienten für Patienten und Angehörige. Das von Leukämiepatienten betriebene Angebot fördert aktive, informierte und selbstbestimmte Patienten durch umfangreiche Informationen über die neuen Möglichkeiten und Chancen in der Behandlung von Leukämie.

Website: http://www.leukaemie-online.de/

Contact: Jan Geissler (1. Vorsitzender)
Adress: LeukaNET e.V., Am Rothenanger 1b, 85521 Riemerling, Germany

E-mail: info@leukaemie-online.de

Hungary

CML es GIST beteg egyesület
CML and GIST patient’s Association in Hungary.

Website: http://www.cmlgist.hu/

Adress: 6800 Hódmezővásárhely, Medgyessy Ferenc u. 6/c. fsz. 6.
Phone: 06-20-338-3331

E-mail: cmlgist@cmlgist.hu

Ireland

Lymphoma Support Ireland
Lymphoma Support Ireland (LSI) was formed in 1987, to provide information, advice and emotional support, for people with Hodgkin Lymphoma (Hodgkin Disease) (HD) and Non Hodgkin Lymphoma (NHL) and their carers, located in Ireland.

Website: http://www.lymphoma.ie
Adress: c/o Irish Cancer Society, 43/45 Northumberland Road Dublin 4
Phone: 01-2310 500

E-mail: info@lymphoma.ie

Italy

Associazione Italiana contro le Leucemie-Linfomi e Mieloma
Sono a vostra disposizione anche i reportage degli ultimi convegni medici internazionali. Gli argomenti trattati, nonostante la loro complessità, sono esposti con un linguaggio semplice e chiaro.

Website: http://www.ail.it/

Adress: Via Casilina 5, 00182 Roma, Italia
Phone: +39 06 7038601

E-mail: ailpazienti@ail.it

Latvia

Limfomas pacientu atbalsta organizacija
Limfomas pacientu atbalsta biedrību šobrīd droši var saukt par jaunu cilvēku- domubiedru grupu, tāpēc, iespējams, sanāksmes norit brīvā un nepiespiestā gaisotnē, bet darāmie darbi veicas viegli un ātri. Katra tikšanās reize ir vērtīga ikvienam klātesošajam – vai tā būtu tikšanās ar speciālistiem un atbildes uz jautājumiem, kam neatliek laika ikdienā, vai domu un pieredzes apmaiņa savā starpā - „Kā Tev bija? ”, „Ko man darīt šajā situācijā? ”, „Tev taču pienākas atvieglojumi!”, vai arī vienkārši pamatīga C vitamīna deva smieklu veidā.

Address: The Lymphoma Patient Support Association, Linezera street 6, Riga, LV-1006
Phone: 00371 7 103 202

E-mail: info@limfoma.lv
Leikemijas slimnieku atbalsta biedriba
Association of Support for Leukemia Patients. Language: Latvian

Website: http://www.leikemija.lv/

Adress: Leikēmijas slimnieku atbalsta biedrība, a/k 250, Rīga, LV- 1050

E-mail: leikemijasbiedriba@one.lv

Netherlands

Stichting Zeldzame Bloedziekten
Wij zijn een stichting die, onze naam geeft dit al aan, patiënten met zeldzame bloedziekten op allerlei gebieden probeert van dienst te zijn. Daarom hebben verschillende bloedziektengroepen hun activiteiten gebundeld in een domeinnaam www.bloedziekten.nl waarbij ze proberen gebruik te maken van elkaars synergie.

Website: http://www.bloedziekten.nl

Adress: Postbus 83, 1670 AB Medemblik

E-mail: info@bloedziekten.nl

Portugal

Associacao Portuguesa contra a Leucemia
Patient organization located in Portugal.

Website: http://www.apcl.pt

Adress: Rua Nunes Claro nº8C., 1200-209 Lisboa
Phone: 21 342 2204/05
Fax: 21 342 2206

E-mail: geral@apcl.pt
Portuguese Leukemia and Lymphoma Association
Patient organization located in Portugal

Website: http://www.apll.org/teste/

Adress: Estrada Interior da Circunvalação, 6657, salas 90 e 91, 4200-177 Porto, Portugal
Phone: 914 349 313

E-mail: geral@apll.org

Slovenia

Drustvo bolnikov z limfomom
Spletna stran www.limfom.si, ki ste jo ravnokar odprli, je rezultat nekaj mesečnega dela, ki pa še zdaleč ni končano. Čeprav ogrodje spletne strani, ki so ga naredili v spletni agenciji Sonce.net, že stoji, pa nas čaka še veliko dela s pripravljanjem vsebin. Zato lahko rečem, da bo vsak ted.

Website: http://www.limfom.si

E-mail: info@limfom.si

Spain

Asociacion Espanola de Afectados por Linfomas, AEAL
AEAL es una asociación sin ánimo de lucro que se financia con las aportaciones de los socios y donaciones privadas. Ésta página web está financiada íntegramente con los fondos de la asociación.

Website: http://www.aeal.es/

Adress: Santa Hortensia 15, Office-K - 28002 Madrid
Phone: 901 220 110 / 91 563 18 01

E-mail: contacta@aeal.es

Switzerland

Stiftung zur Förderung der Knochenmarktransplantation (SFK)
Die SFK wurde 1994 gegründet durch eine Privatinitiative, aus eigener Betroffenheit. Sie ist von sämtlichen Steuern befreit und steht ehrenamtlich, praktisch rund um die Uhr, mit ihren Hilfeleistungen an Leukämie erkrankten jungen Menschen, Kindern und ihren Familien mit Rat und Tat zur Seite.

Website: http://www.knochenmark.ch/

Adress: Vor der Rainholzstr. 3, 8123 Ebmatingen, Switzerland
Phone: 044 982 1212

E-mail: info@knochenmark.ch
Schweizerische Patientenorganisation für : ho/noho
Die Selbsthilfegruppe mit Sitz in Basel, begleitet Erwachsene Personen mit malignen Lymphomen und deren Angehörige, ist Mitglied der Lymphoma Coalition, einem internationalen Netzwerk von Lymphompatientengruppen, sowie der Deutschen Leukämie- und Lymphomhilfe e.V., Bonn

Website: http://www.lymphome.ch/

Adress: ho/noho - Schweizerische Patientenorganisation für Lymphombetroffene und Angehörige, Rosmarie Pfau, Weidenweg 39, CH-4147 Aesch BL
Phone: 0041 61 421 09 27

E-mail: info@lymphome.ch

UK

CML Support UK
This site is published and maintained by CML patients and carers, for the use of CML patients, their families and carers. Our aim is to provide support and updated information regarding the best available therapy for CML patients in the UK and Europe, although we warmly welcome membership from all CML patients worldwide.

Website: http://www.cmlsupport.org.uk/

Adress: PO Box 56213, London N4 4WF, United Kingdom

E-mail: cmlsupportgroup@gmail.com
Leukaemia CARE
Leukaemia CARE exists to provide vital care and support to all those whose lives are affected by leukaemia, lymphoma and the allied blood disorders. Our work extends to the welfare of families and carers, as well as that of patients themselves. Quite simply... 'supporting a quality of life'.

Website: http://www.leukaemiacare.org.uk/1/home.html

Adress: One Birch Court, Blackpole East, Worcester. WR3 8SG UK
Phone: 01905 755977
CARE Line: 0800 169 6680

E-mail: care@leukaemiacare.org.uk
Lymphoma Association
The Lymphoma Association provides emotional support and information on a range of issues to anyone with lymphatic cancer and to their families, carers and friends.

Website: http://www.lymphomas.org.uk/

Adress: The Lymphoma Association , PO Box 386, Aylesbury, Bucks, HP20 2GA.
Phone: 0808 808 5555

E-mail: information@lymphomas.org.uk