Information-for-Patients---By-Cancer-Site

 

Organisations dealing with Rare Cancers in general

Bulgaria

Organisation Name: Национална пациентска организация
Organisation Name in English: National patients organization
Type of Rare Cancer: All cancers
Email: asengeo@abv.bg
Phone: 00359 893555961 / 00359 (0) 2 958 95 19
Website: http://www.npo.bg/
Address: Sofia 1142, Lyuben Karavelov № 3, 3rd floor, ap. 5

Greece

Organisation Name: ΜΕΙΝΕ ΔΥΝΑΤΟΣ
Organisation Name in English: "Be Strong" - Association of cancer patients
Type of Rare Cancer: All cancers
Email: info@bestrong.org.gr
Phone: 0030 210 86 200 85/ 0030 6932 209001 (mobile)
Website: http://www.bestrong.org.gr

Address: Agias Zonis 1A, Kipseli, Athens 113 61

 

Organisation Name: Σύλλογος Καρκινοπαθών - Εθελοντών - Φίλων - Ιατρών «Κ.Ε.Φ.Ι»
Organisation Name in English: "KEFI" Association of Cancer Patients of Athens
Type of Rare Cancer: All cancers
Email: info@anticancerath.gr
Phone: 0030 210 6468 222/ 0030 210 6447 002
Website: http://www.anticancerath.gr
Address: Etolias 33-35, 115 23 Athens (2nd Floor)

Romania

Organisation Name: Asociaţia Română de Cancere Rare – ARCrare
Organisation Name in English:  Romanian Association of Rare Cancers
Type of Rare Cancer: All rare cancers
Email: dorica.dan@eurordis.org 
Phone: n.a.
Website: http://www.arcrareromania.ro
Address: Strada 22 Decembrie 1989 Zalău

Spain

Organisation Name: APTURE - Asociación de Pacientes con Tumores Raros de España
Organisation Name in English: -
Type of Rare Cancer: All rare cancers
Email: info@apture.org
Phone: n.a.
Website: http://www.apture.org/
Address: n.a.

UK

Organisation Name: Cancer of Unknown Primary (CUP) Foundation
Organisation Name in English: n.a.
Type of Rare Cancer: All types of cancers including sarcoma
Email: supporters@cupfoundjo.org.
Phone: n.a.
Website: http://www.cupfoundjo.org/

Address: The Follies, Brightwalton, Newbury, England, RG20 7BZ

 

Organisation Name: Rarer Cancers Foundation

Organisation Name in English: n.a.
Type of Rare Cancer: All rare cancers
Email: contact@rarercancers.org.uk
Phone: 0044 (0)208 692 2910
Website: http://www.rarercancers.org.uk/
Address: Unit 7B, Evelyn Court, Grinstead Road, London SE8 5AD

Brain Tumours

International and European Organisations

Organisation Name: International Brain Tumour Alliance (IBTA)
Organisation Name in English: n.a.
Type of Rare Cancer: Brain Tumours
Email: kathy@theibta.org
Phone: 0044 (0) 1737 813872
Website: http://www.theibta.org/

Address: PO Box 244, Tadworth, Surrey KT20 5WQ, United Kingdom

 

Organisation Name: Musella Foundation For Brain Tumor Research & Information
Organisation Name in English: n.a.
Type of Rare Cancer: Brain Tumours
Email: musella@virtualtrials.com
Phone: 01 (888)-295-4740 / 01 (516)-270-5182
Website: http://virtualtrials.com/
Address: 1100 Peninsula Blvd Hewlett, NY 11557, USA

Belgium

Organisation Name: CAN Cé-TU? asbl [Région Wallonie - Bruxelles]
Organisation Name in English: -
Type of Rare Cancer: Brain Tumours
Email: info@cancetuasbl.be
Phone: 0032 477 66 76 49
Website: http://www.cance-tu-asbl.eu/

Address: Rue de Gavre 8A, 7812 LIGNE

 

Organisation Name: Werkgroep Hersentumoren vzw
Organisation Name in English: Study Group Brain Tumours
Type of Rare Cancer: Brain Tumours
Email: info@wg-hersentumoren.be
Phone: 0032 495 303 511
Website: http://www.wg-hersentumoren.be/site_en/about.php
Address: Gasstraat 5 - B-2950 Kapellen

France

Organisation Name: GFME - Glioblastome Association Michèle Esnault
Organisation Name in English: -
Type of Rare Cancer: Glioblastoma
Email: gfme@free.fr
Phone: 33 (0)4 91 64 55 86
Website: http://gfme.free.fr/
Address: 22 Boulevard Camille Flammarion, 13001 MARSEILLE

Italy

Organisation Name: A.I.T.C. Associazione Italiana Tumori Cerebrali Onlus
Organisation Name in English: -
Type of Rare Cancer: Brain Tumours
Email: info@tumoricerebrali.it
Phone: 0039 339 6899349

Website: http://www.tumoricerebrali.it/

Address: via Stefano Canzio, 10 - 20131 Milano

 

Organisation Name: ANB - Associazione Italiana per la Lotta al Neuroblastoma - ONLUS
Organisation Name in English: Italian Association for the Fight against Neuroblastoma
Type of Rare Cancer: Neuroblastoma
Email: neuroblastoma@neuroblastoma.org 
Phone: 0039 106018938
Website: www.neuroblastoma.org

Address: Largo G. Gaslini, 5 - 16148 GENOVA

 

Organisation Name: Italia Glioblastoma Multiforme - cancro al cervello
Organisation Name in English: -
Type of Rare Cancer: Glioblastoma
Email: iosim@hotmail.it
Phone: 0039 3270859967
Website: https://www.facebook.com/groups/italia.glioblastoma.multiforme/
Address: n.a.

Netherlands

Organisation Name: Stichting STOPhersentumoren.nl
Organisation Name in English: -
Type of Rare Cancer: Brain Tumours
Email: info@stophersentumoren.nl
Phone: n.a.
Website: http://www.stophersentumoren.nl/

Address: Hoofdstraat 88, 3972 LC Driebergen-Rijssenburg

 

Organisation Name: Vereniging Cerebraal
Organisation Name in English: Supportgroup Braintumors Cerebraal
Type of Rare Cancer: Brain Tumours
Email: werkgroephersentumoren@cerebraal.nl
Phone: 0031 (0)30 296 6575
Website: http://www.cerebraal.nl/
Address: Palestrinastraat 1b, 3533 EH, UTRECHT

Spain

Organisation Name: ASATE - Asociación de Adectados pos Tumores Cerebrales en Espana
Organisation Name in English: -
Type of Rare Cancer: Brain Tumours
Email: oscarpm@asate.es
Phone: 0034 91 563 18 01 / 0034 673 207 153
Website: www.asate.es

Address: C/ San Nicolás 15 - (Acceso por Calle Noblejas) 28013 MADRID

 

Organisation Name: Izas, la princesa guisante
Organisation Name in English: -
Type of Rare Cancer: Brain Tumours, Gliomatosis cerebri
Email: informacion@izaslaprincesaguisante.org
Phone: 0034 974241201
Website: http://izaslaprincesaguisante.org/en

Address: Calle Desengaño, 48, 22001 HUESCA

Sweden

Organisation Name: Svenska hjarntumorforeningen
Organisation Name in English: Swedish Brain tumour association
Type of Rare Cancer: Brain tumours
Email: alex.johansson@hjarntumorforeningen.se
Phone: 0046 (0)736-378391
Website: http://www.hjarntumorforeningen.se
Address: Brädgatan 49, 854 60 Sundsvall

UK

Organisation Name: Astro Brain Tumour Fund
Organisation Name in English: n.a.
Type of Rare Cancer: Low grade Glioma
Email: info@astrofund.org.uk
Phone: 0044 (0)1485 57 27 67
Website: http://www.astrofund.org.uk/

Address: The Cart Lodges, 1 West Hall Farm Barns Sedgeford Norfolk PE36 5NA

 

Organisation Name: Brain Tumour Research
Organisation Name in English: n.a.
Type of Rare Cancer: Brain Tumours
Email: sue@braintumourresearch.org
Phone: 0044 (0)1296 733011
Website: www.braintumourresearch.org

Address: The Business Centre, Padbury Hill Farm, Padbury, Buckingham, Bucks  MK18 2BN

 

Organisation Name: Brainstrust - the brain cancer people
Organisation Name in English: n.a.
Type of Rare Cancer: Brain Tumours
Email: hq@brainstrust.org.uk
Phone: 0044 (0)1983 292 405
Website: http://www.brainstrust.org.uk/

Address: 4 Yvery Court, Castle Road, Cowes, Isle of Wight PO31 7QG

 

Organisation Name: The Brain Tumour Charity
Organisation Name in English: n.a.
Type of Rare Cancer: Brain tumours
Email: comms@thebraintumourcharity.org
Phone: 0044 (0)1252 749990 / Helpline: 0808 800 0004
Website: http://www.thebraintumourcharity.org/

Address: Hartshead House 61-65 Victoria Road Farnborough Hampshire, GU14 7PA

 

Organisation Name: Brainwaves NI
Organisation Name in English: n.a.
Type of Rare Cancer: Brain Tumours
Email: info@brainwaves-ni.org
Phone: 0044 (0)28 9335 3995
Website: http://www.brainwaves-ni.org/

Address: 68 Cable Road, Whitehead, Co.Antrim, BT38 9PZ

 

Digestive organs

France

Organisation Name: AMARAPE - Association contre les maladies rares du péritoine
Organisation Name in English: AMARAPE - Patients association against rare diseases of the peritoneum
Type of Rare Cancer: Primary peritoneal tumor
Email: contact@amarape.com
Phone: 33 (0)4 78 86 59 84
Website: http://www.amarape.com/
Address: Centre Hospitalier Lyon Sud 165 Chemin du Grand Revoyet, 69495 PIERRE-BENITE

Germany

Organisation Name: TEB e.V. Selbsthilfe
Organisation Name in English: -
Type of Rare Cancer: Pancreatic tumours
Email: geschaeftsstelle@teb-selbsthilfe.de
Phone: 0049 (0)7141 95 63636
Website: http://www.teb-selbsthilfe.de/
Address: Ruhrstrasse 10/1, 71636 LUDWIGSBURG

UK

Organisation Name: AMMF – The Cholangiocarcinoma Charity
Organisation Name in English: n.a.
Type of Rare Cancer: Bile duct cancer
Email: info@ammf.org.uk
Phone: 0044 (0)1371 811811
Website: www.ammf.org.uk

Address: Ambrose Cottage, Oxen End, Little Bardfield, Essex CM7 4PR

 

Organisation Name: Pancreatic Cancer UK
Organisation Name in English: n.a.
Type of Rare Cancer: Pancreatic tumours
Email: anna@pancreaticcancer.org.uk
Phone: 0044 (0)20 3535 7090 - (0)20 3535 7099 (Support line)
Website: http://www.pancreaticcancer.org.uk/

Address: 2nd Floor, Camelford House, 89 Albert Embankment, London SE1 7TW

 

Organisation Name: Pseudomyxoma Survivor
Organisation Name in English: n.a.
Type of Rare Cancer: Pseudomyxoma Peritonei (mucinous adenocarcinoma)
Email: angela.brook@pseudomyxomasurvivor.co.uk
Phone: 0044 (0)7530 206 357
Website: http://www.pseudomyxomasurvivor.co.uk/

Address: 5, Lime Close, Broughton, KETTERING NN14 1NN

 

Organisation Name: OPA - The Oesophageal Patients Association

Organisation Name in English:
Type of Rare Cancer: Oesophageal cancer
Email: enquiries@opa.org.uk
Phone Number: 0044 (0) 121 704 9860
Website: http://www.opa.org.uk/

Address: 22 Vulcan House, Vulcan Road, Solihull, B91 2JY.

Endocrine Tumours

Bulgaria

Organisation Name: ВИОМ
Organisation Name in English: VIOM
Type of Rare Cancer: Thyroid cancer 
Email: viom_ngo@abv.bg
Phone Number: 00359 888 788311
Website: http://www.thyroidbg.com/bg/

Address: D.Hadjikozevstr. 88, 1421 Sofia Bulgaria

 

Finland

Organisation Name: Aivolisäke-potilasyhdistys Sella ry
Organisation Name in English: -
Type of Rare Cancer: Pituitary tumours
Email: piritta.ruuska@gmail.com
Phone: n.a.
Website: http://www.sellanet.com/
Address: Sepeteuk, sentie 1, 00760 HELSINKI

France

Organisation Name: APTED - Association des Patients porteurs de Tumeurs Endocrines Diverses
Organisation Name in English: -
Type of Rare Cancer: Endocrine Tumours
Email: contact@apted.fr
Phone: 33 (0)1 43 67 59 17
Website: http://www.apted.fr/Pages/default.aspx
Address: 162, avenue Lacassagne, 69424 Lyon

Germany

Organisation Name: Netzwerk Hypophysen- und Nebennierenerkrankungen e.V.
Organisation Name in English: -
Type of Rare Cancer: Endocrine Tumours
Email: netzwerk@glandula-online.de
Phone: 0049 (0)911-9792009-0
Website: http://www.glandula-online.de/

Address: Waldstr. 53, 90763 FÜRTH

 

Organisation Name: Ohne Schilddrüse leben e.V.
Organisation Name in English: -
Type of Rare Cancer: Thyroid Tumour
Email: harald.rimmele@sd-krebs.de
Phone: 0049 (0)30 27581146
Website: http://www.sd-krebs.de/

Address: Rungestraße 12, 10179 BERLIN

 

Organisation Name: SLD - Schilddrüsen-Liga Deutschland e.V.
Organisation Name in English: -
Type of Rare Cancer: Thyroid Tumour
Email: info@schilddruesenliga.de
Phone: 0049 (0)228 386 9060 / (0)228 3779287 (Chairman)
Website: http://www.schilddruesenliga.de/home.html
Address: Waldstr. 73, 53177 BONN

Spain

Organisation Name: AECAT - Asociación Española de Cancer de Tiroides
Organisation Name in English: -
Type of Rare Cancer: Thyroid Tumour
Email: info@aecat.net
Phone: 34 901220110
Website: http://www.aecat.net/
Address: Calle Santa Hortensia, 15, 28002 MADRID

UK

Organisation Name: Butterfly Thyroid Cancer Trust (BTCT)
Organisation Name in English: n.a.
Type of Rare Cancer: Thyroid cancer
Email: enquiries@butterfly.org.uk
Phone: 0044 (0)1207 545469
Website: www.butterfly.org.uk
Address: PO Box 205, Rowlands Gill, Tyne & Wear, NE39 2WX

Female Genital Organs

Germany

Organisation Name: VulvaKarzinom Selbsthilfegruppe e.V.
Organisation Name in English: - 
Type of Rare Cancer: Vulvar cancer
Email: info@vulvaKarzinom-shg.de
Phone: 0049 (0)4421972281
Website: http://vulvakarzinom-shg.de/board/content.php
Address: Kniprodestr 94, 26388 WILHELMSHAVEN

Greece

Organisation Name: Όμιλος Εθελοντών κατά του Καρκίνου- ΑγκαλιάΖΩ
Organisation Name in English: Society of Volunteers Against Cancer (AgaliaZO)
Type of Rare Cancer: Cervical Cancer
Email: oekk@otenet.gr
Phone: 0030 2104181641
Website: http://www.oekk.gr/
Address: Leosthenous 21-23, Pireas 18536

Italy

Organisation Name: ACTO - Alleanza Contro il Tumore Ovarico - onlus
Organisation Name in English: ACTO - Alliance Against Ovarian Cancer - non-profit organization
Type of Rare Cancer: Ovarian
Email: segreteria@actoonlus.it
Phone: 0039 (0) 370 7054294
Website: http://www.actoonlus.it
Address: Via Marsala 11 -  20121 Milano

Poland

Organisation Name: Magnolia - Stowarzyszenie kobiet z problemami onkologiczno
Organisation Name in English: Organisation of women with Gynaecological cancer problems
Type of Rare Cancer: Ovarian
Email: biuro@stowarzyszenie-magnolia.org
Phone: 0048 601 729 249
Website: http://www.stowarzyszenie-magnolia.org/
Address: Żychlin, ul. Parkowa 2, 62-571 Stare Miasto

Spain

Organisation Name: Asociación de Afectados por Cáncer de Ovario - ASACO
Organisation Name in English: Association of Patients affected by Ovarian Cancer
Type of Rare Cancer: Ovarian
Email: presidenta@asociacionasaco.es
Phone: 0034 91 563 18 01
Website: www.asociacionasaco.es
Address: C/ San Nicolás, 15 (acceso C/ Noblejas, 1), 28013 Madrid, Spain28013 Madrid, Spain

UK

Organisation Name: DEBBIE FUND
Organisation Name in English: n.a.
Type of Rare Cancer: Cervical
Email: info@debbiefund.org
Phone: 0044 (0)20 7679 6325
Website: www.debbiefund.org/

Address: UCL Cancer Institute. Paul O’Gorman Building 72 Huntley Street, London WC1E 6BT

 

Organisation Name: Jo’s Cervical Cancer Trust
Organisation Name in English: n.a.
Type of Rare Cancer: Cervical cancer
Email: Claire@jostrust.org.uk
Phone: 0044 (0)20 7250 8311
Website: www.jostrust.org.uk

Address:  Jo's Cervical Cancer Trust - CAN Mezzanine, 49 – 51 East Road London N1 6AH

 

Organisation Name: Ovarian Cancer Action
Organisation Name in English: n.a.
Type of Rare Cancer: Ovarian cancer
Email: info@ovarian.org.uk
Phone: 0044 (0)207 380 1730
Website: www.ovarian.org.uk

Address: 8-12 Camden High Street, NW1 0JH London

 

Organisation Name: Target Ovarian Cancer
Organisation Name in English: n.a.
Type of Rare Cancer: ovarian cancer
Email: info@targetovarian.org.uk
Phone: 0044 (0)20 7923 5470
Website: http://www.targetovariancancer.org.uk/

Address: Target Ovarian Cancer, 2 Angel Gate, London, EC1V 2PT

 

Organisation Name: Womb Cancer Info (WCI)
Organisation Name in English: n.a.
Type of Rare Cancer: Womb (uterus) cancer
Email: ask_wci@outlook.com
Phone: n.a.
Website: http://wombcancerinfo.wix.com/home
Address: n.a.

Male Genital Organs

Austria

Organisation Name: Plattform Hodenkrebs Austria
Organisation Name in English: -
Type of Rare Cancer: Testicular cancer
Email: oth@hodenkrebs.at
Phone: 0043 (0)699 11518135
Website: http://www.hodenkrebs.at/
Address: Korngasse 11/2/6, 2405 BAD DEUTSCH-ALTENBURG

Poland

Organisation Name: Magnolia - Stowarzyszenie kobiet z problemami onkologiczno
Organisation Name in English: Organisation of women with Gynaecological cancer problems
Type of Rare Cancer: Testicular cancer
Email: biuro@stowarzyszenie-magnolia.org
Phone: 0048 601 729 249
Website: http://www.stowarzyszenie-magnolia.org/pl/13/rak-jadra
Address: Żychlin, ul. Parkowa 2, 62-571 Stare Miasto

UK

Organisation Name: It's in the Bag
Organisation Name in English: n.a.
Type of Rare Cancer: Testicular cancer
Email: hello@itsinthebag.org.uk
Phone: n.a.

Website: www.itsinthebag.org.uk

Address: n.a.

Haematological Tumours

International and European Organisations

Organisation Name: European Waldenström's Macroglobulinemia Network
Organisation Name in English: n.a.
Type of Rare Cancer: Waldenström macroglobulinemia
Email: moom@planet.nl / secretary@ewmnetwork.eu
Phone: 0031 73 5217643
Website: http://www.ewmnetwork.eu

Address: n.a.

 

Organisation Name: CML Advocates Network / Leukemia Patient Advocates Foundation
Organisation Name in English: n.a.
Type of Rare Cancer: Chronic Myeloid Leukemia (CML)
Email: info@cmladvocates.net
Phone: 0049 89 6836807
Website: www.cmladvocates.net

Address: Leukemia Patient Advocates Foundation, Münzgraben 6, 3000 Bern, Switzerland

 

Organisation Name: MPN Advocates Network / Leukemia Patient Advocates Foundation
Organisation Name in English: n.a.
Type of Rare Cancer: Myeloproliferative Neoplasms (MPN)
Email: info@mpn-advocates.net
Phone: 0049 89 6836807
Website: www.mpn-advocates.net

Address: Leukemia Patient Advocates Foundation, Münzgraben 6, 3000 Bern, Switzerland

Austria

Organisation Name: Myelom- und Lymphomhilfe Österreich
Organisation Name in English: -
Type of Rare Cancer: Multiple Myeloma/Lymphoma
Email: elfi.jirsa@myelom-lymphom.at
Phone: 0043 (0)664 38 54 161
Website: http://www.myelom-lymphom.at
Address: Hervicusgasse 2/19, 1120 WIEN

Belgium

Organisation Name: CMP Vlaanderen vzw - Contactgroep Multipel Myeloom Patiënten Vlaanderen vzw
Organisation Name in English: -
Type of Rare Cancer: Multiple myeloma
Email: info@cmp-vlaanderen.be
Phone: 0031 (0)89-354366
Website: n.a.
Address: n.a.

 

Organisation Name: LCH- Langerhans cel Hystiocytosis vzw/asbl

Organisation Name in English: -
Type of Rare Cancer: Langherans cell histiocytosis
Email: karelhenderickx@hotmail.com
Phone: 0032 16 490760
Website: http://www.lch.be

Address: Bovenbergstraat 20 A, 3020 HERENT

 

Organisation Name: Hodgkin en non-Hodgkin vzw

Organisation Name in English: Hodgkin and non-Hodgkin Association
Type of Rare Cancer: Hodgkin's/Lymphomas
Email: info.hodgkin@gmail.com
Phone: 0032 9221 9910 (mobile: 0032 495 561 509)
Website: http://hodgkin.be

Address: Achterhekers 13 B-9052 Zwijnaarde Belgium

 

Organisation Name: LVV - LymfklierkankerVereniging Vlaanderen
Organisation Name in English: Flanders Lymphoma association
Type of Rare Cancer: Hodgkin's/Lymphomas
Email: info.lymfklierkanker@gmail.com / chantaldenblijden.lvv@gmail.com
Phone: 0032 59 238565 (mobile Chantal: 0032 486 448482)
Website: http://lymfklierkanker.be/nl/

Address: Berkenlaan 1, 8420 DE HAAN

 

Organisation Name: MyMu Wallonie-Bruxelles (MyMu)
Organisation Name in English: -
Type of Rare Cancer: Multiple myeloma
Email: b.beaume@skynet.be
Phone: 0032 (0)81/211937
Website: www.myelome.be
Address: Avenue Montgomery 12, 7500 Tournai

Bulgaria

Organisation Name: BSL - Bulgarsko Sdruzhenie Limfom
Organisation Name in English: BSL -Bulgarian Lymphoma Patients' Association
Type of Rare Cancer: Hodgkin's/Lymphomas
Email: info@lymphom-bg.com
Phone: 00359 (0)2 866 47 00
Website: http://www.lymphom-bg.com

Address: 15 "Cherni vruh" blvd, 1000 SOFIA

 

Organisation Name: Национално сдружение на хора страдащи от хронична миелогенна левкемия - ХМЛ
Organisation Name in English: Association of People Suffering from Chronic Myeloid Leukemia
Type of Rare Cancer: Chronic Myelogenous Leukaemia
Email: hml@abv.bg
Phone: 00359 899123909
Website: www.hml-bg.com
Address: Mladost 321V, apt. 8, Lovech

Croatia

Organisation Name: Hrvatska udruga leukemija i limfomi (HULL)
Organisation Name in English: Croatian Leukaemia and Lymphoma Society (HULL)
Type of Rare Cancer: Leukemia and Lymhoma
Email: zagreb.hull@gmail.com
Phone: 385 1 4873 561 (mobile)
Website: http://www.hull.hr
Address: n.a.

Czech Republic

Organisation Name: Česká myelomová skupina, nadační fond
Organisation Name in English: Czech Myeloma Group Foundation
Type of Rare Cancer: Multiple Myeloma
Email: cmg@myeloma.cz
Phone: 420 532 233 551 or 420 532 233 998
Website: http://www.myeloma.cz

Address: Kamenice 753/5, 625 00 Brno

 

Organisation Name: Diagnoza Leukemie
Organisation Name in English: Diagnose Leukemie
Type of Rare Cancer: Chronic Myeloid Leukemia
Email: janapel@centrum.cz
Phone: 420 728 308 360
Website: http://diagnoza-cml.cz

Address: Ústav hematologie a krevní transfuse, U nemocnice 1, 128 00 Praha 2

 

Organisation Name: Klub pacientu mnohocetný myelom (KPMM)
Organisation Name in English: Multiple Myeloma Patient Support Group
Type of Rare Cancer: Multiple Myeloma
Email: koordinatorka@mnohocetnymyelom.cz
Phone: 420 603310523
Website: http://www.mnohocetnymyelom.cz

Address: Kamenice 5, 62500 BRNO

 

Denmark

Organisation Name: Polycytæmi Foreningen i Danmark(PV foreningen)
Organisation Name in English: PV-The Association of Polycythemia Vera in Denmark
Type of Rare Cancer: Polycythemia Vera
Email: pvf@pv-foreningen.dk
Phone: 0045 4733 3501
Website: http://www.pv-foreningen.dk
Address: Spurvevej 9, 3550 Slangerup

France

Organisation Name: AFIRMM - Association Française pour les Initiatives de Recherche sur les Mastocytes et les Mastocytoses
Organisation Name in English: -
Type of Rare Cancer: Mastocytosis
Email: contact@afirmm.com
Phone: 33-(0)6-89-13-91-78
Website: http://www.afirmm.com/index_default.php

Address: 3 Avenue Georges V, 75008 Paris

 

Organisation Name: Association ALTE
Organisation Name in English: - 
Type of Rare Cancer: MDS, Essential Thrombocythemia
Email: contact@alte-asso.org
Phone: 33 (0)4 82 53 35 74 / 0033 (0) 981377212
Website: http://alte-asso.org/fr/

Address: 4 Rue Jules FERRY 69360 Saint-Symphorien d'Ozon

 

Organisation Name: Association Laurette Fugain
Organisation Name in English: - 
Type of Rare Cancer: Leukemia
Email: giuseppinadileo@laurettefugain.org
Phone: n.a.
Website: http://www.laurettefugain.org

Address: 101 Rue des Sevres, 75279 Paris CEDEX 06

 

Organisation Name: Connaître et Combattre les Myélodysplasies (CCM)
Organisation Name in English: - 
Type of Rare Cancer: MDS
Email: associationccm@yahoo.fr
Phone: 33 (0)6 37 22 79 87
Website: www.myelodysplasies.org

Address: 19, rue de l'Estrapade, 75005 Paris

 

Organisation Name: France Lymphome Espoir
Organisation Name in English: - 
Type of Rare Cancer: Hodgkin/lymphomas
Email: infos@francelymphomeespoir.fr
Phone: 0033 142385466 / 0033 607700546
Website: http://www.francelymphomeespoir.fr/

Address: 1 avenue Claude Vellefaux, 75475 Paris cedex 10

 

Organisation Name: LMC France - Leucémie Myéloïde Chronique France
Organisation Name in English:
Type of Rare Cancer: Chronic Myeloid Leukaemia
Email: contact@lmc-france.fr
Phone: 33 (0)6 52 55 73 80
Website: http://www.lmc-france.fr/

Address: 66 chemin de la Valbarelle à Saint-Marcel, Rés. Lycée Est, Bât. 2E4, 13010 MARSEILLE

 

Organisation Name: SILLC - Aide, Soutien et Information pour la leucémie Lymphoïde Chronique et de la maladie de Waldenström
Organisation Name in English:
Type of Rare Cancer: Waldenström macroglobulinemia
Email: danielgr@noos.fr
Phone: 33 (0)6 21 02 78 62
Website: http://www.sillc-asso.org/sillc

Address: 56 rue du Château Landon, 75010 Paris

 

Organisation Name: Waldenström France
Organisation Name in English: -
Type of Rare Cancer: Waldenström macroglobulinemia
Email: contact@waldenstromfrance.org
Phone: 33 (0)4 90 87 09 30
Website: http://portail.waldenstromfrance.org
Address: 2 Rue Hernandes de Heredia, 84000 AVIGNON

Germany

Organisation Name: Histiozytosehilfe e.V.
Organisation Name in English: -
Type of Rare Cancer: Langerhans cell histiocytosis
Email: info@histiozytose.org
Phone: 0049 (0)214 504117
Website: http://www.histiozytose.org/ueber-uns

Address: Gluckstraße 30a, 51375 LEVERKUSEN

 

Organisation Name: HZL - Haarzell-Leukämie-Hilfe e.V. - HLH
Organisation Name in English: Hairy cell Leukemia-eV
Type of Rare Cancer: Hairy Cell Leukaemia
Email: info@haarzell-leukaemie.de
Phone: 0049 (0)531 701 224 69
Website: http://www.haarzell-leukaemie.de

Address: Postfach 3001, 38630 Goslar

 

Organisation Name: Leukaemie-Online.de / LeukaNET e.V
Organisation Name in English: n.a.
Type of Rare Cancer: Leukemia
Email: info@leukaemie-online.de
Phone: n.a.
Website: http://www.leukaemie-online.de/

Address: n.a.

 

Organisation Name: Leukämiehilfe RHEIN-MAIN
Organisation Name in English:  -                       
Type of Rare Cancer: All Haematological Malignancies
Email: a.waldmann@LHRM.de
Phone: 0049 (0)6142 32123
Website: http://www.leukaemiehilfe-rhein-main.de/

Address: Falltorweg 6, D-65428 Rüsselsheim

 

Organisation Name: Mastozytose e.V.
Organisation Name in English:
Type of Rare Cancer: Mastocytosis
Email: vorstand@mastozytose.de
Phone: 0049 (0)7951 45431
Website: http://www.mastozytose.de

Address: Ingersheimer Weg 2, 74564 CRAILSHEIM

 

Organisation Name: Myelom-Gruppe Rhein-Main
Organisation Name in English: Myeloma Group Rhein-Main
Type of Rare Cancer: Multiple Myeloma
Email: buero@lhrm.de
Phone: 0049 (0) 6142/3 22 40
Website: http://myelom-gruppe.lhrm.de/

Address: Falltorweg 6, D-65428 Rüsselsheim

 

Organisation Name: MDS Patienten Interessen Gemeinschaft
Organisation Name in English: -
Type of Rare Cancer: MDS
Email: b.kuhle@t-online.de
Phone: 0049 (0) 6142 3 22 40 / 0049 41358401
Website: http://www.mds-patienten-ig.org

Address: Falltorweg 6, D-65428 Rüsselsheim

 

Organisation Name: MPN-Netzwerk e.V.
Organisation Name in English: -
Type of Rare Cancer: Myeloproliferative neoplasm
Email: info@mpd-netzwerk.de
Phone: 0049 (0)2761 660121
Website: http://www.mpn-netzwerk.de/home.html

Address: Thomas-Mann-Straße 40, 53111 BONN

 

Organisation Name: Selbsthilfegruppe Polycythämia Vera und Essentielle Thrombozythämie
Organisation Name in English: -
Type of Rare Cancer: Essential thrombocythemia, Polycythemia vera
Email: gfhamel@t-online.de
Phone: 0049 (0)4141 63709
Website: http://www.polyzythaemie.de
Address: Brauerstr. 43, 21680 STADE

Greece

Organisation Name: Artemis - Association on Histiocytosis
Organisation Name in English:
Type of Rare Cancer: Langerhans cell histiocytosis
Email: info@histioartemis.gr
Phone: 0030 210 452 0453
Website: http://www.histioartemis.gr/Index.asp?a_id=1

Address: 10 Skouze St, 18536 PIREUS

 

Organisation Name: Όμιλος Εθελοντών κατά του Καρκίνου- ΑγκαλιάΖΩ
Organisation Name in English: Society of Volunteers Against Cancer (AgaliaZO)
Type of Rare Cancer: Waldenström macroglobulinemia, Lymphoma
Email: oekk@otenet.gr
Phone: 0030 2104181641
Website: http://www.oekk.gr/
Address: Leosthenous 21-23, Pireas 18536

Hungary

Organisation Name: CML és GIST Betegek Egyesülete
Organisation Name in English: CML and GIST Patient Advocacy
Type of Rare Cancer: CML
Email: cmlgist@cmlgist.hu
Phone: 0036 (0)6 20 33 83 331
Website: http://cmlgist.hu/
Address: 6800 Hódmezővásárhely, Medgyessy Ferenc utca 6/C fszt. 6.

Italy

Organisation Name: AIRI LCH - Associazione Italiana Ricerca Istiocitosi a Cellule di Langerhans - ONLUS
Organisation Name in English: -
Type of Rare Cancer: Langerhans cell histiocytosis
Email: onlus@istiocitosi.org
Phone: 0039 041 5340721
Website: http://www.istiocitosi.org

Address: Via Aleardi 78, 30174 MESTRE (VE)

 

Organisation Name: Gruppo AIL Pazienti LMC (GAPLMC)
Organisation Name in English: Group AIL Chronic Myeloid Leukemia Patients
Type of Rare Cancer: Chronic Myeloid Leukaemia
Email: felice.bombaci@virgilio.it
Phone: 0039 (0)6 703 8601
Website: http://www.lmconline.it
Address: n.a.

Netherlands

 

Organisation Name: Histiocytose Nederland
Organisation Name in English: -
Type of Rare Cancer: Histiocytosis
Email: secretariaat@histio.nl
Phone: 0031 (0)6 1041 7340
Website: http://www.histio.nl

Address: Ypendael 3, 3743 AW, BAARN

 

Organisation Name: MPN Stichting - Myeloproliferatieve Neoplasieën Stichting
Organisation Name in English: -
Type of Rare Cancer: Myelofibrosis with myeloid metaplasia
Email: info@mpn-stichting.nl
Phone: 0031 (0)88 0074 300 (wed: 20h30-21h30)
Website: http://www.mpd-stichting.nl

Address: Postbus 10496, 6000 GL WEERT

 

Organisation Name: Stichting Hematon
Organisation Name in English: -
Type of Rare Cancer: Leukemia, Lymphoma, Multiple myeloma, Waldenström’s Microglobulinemia, Lymphoplasmacytonic Lymphoma
Email: secretariaat@hematon.nl / info@hematon.nl
Phone: 0031 (0)30-291 60 90
Website: www.hematon.nl
Address: Postbus 8152,  3503 RD Utrecht, The Netherlands

Poland

Organisation Name: Polskiego Stowarzyszenia Pomocy Chorym na Szpiczaka
Organisation Name in English: Myeloma Patients Aid Association
Type of Rare Cancer: Multiple myeloma
Email: romansadzuga@szpiczak.org.pl
Phone: 0048 89 534 25 90
Website: http://szpiczak.org.pl

Address: ul. Elbląska 5 10-672 Olsztyn

 

Organisation Name: SPBS - Ogolnopolskie Stowarzyszenie Pomocy Chorym na Przewlekla Bialaczke Szpikowa
Organisation Name in English: National Association for CML Patients Aid (SPBS)
Type of Rare Cancer: CML
Email: biuro@spbs.com.pl
Phone: 0048 504 153 136
Website: http://www.spbs.com.pl

Address: Bychowska 56, 04-536 WARSZAW

 

 

Portugal

Organisation Name: APCL - Associação Portuguesa Contra a Leucemia
Organisation Name in English: -
Type of Rare Cancer: CML, CLL, Lymphoma, Multiple Myeloma
Email: sofiasacardoso@apcl.pt / geral@apcl.pt
Phone Number: + 351 21 342 22 15 / + 351 96 205 59 07
Website: http://www.apcl.pt/
Address: Rua Nunes Claro nº8C, 1200-209, LISBOA

Romania

Organisation Name: Asociatia Romana Impotriva Leucemiei
Organisation Name in English: Romanian Leukaemia Association
Type of Rare Cancer: Hodgkin and Leukemia
Email: anka.mateescu@gmail.com
Phone: 0040 747 444 093
Website: www.aril.ro

Address: Otopeni, Calea Bucurestilor nr  84, bl. B2-1, sc.2 , ap.14, jud Ilfov

 

Organisation Name: Myeloma Euronet Romania
Organisation Name in English: n.a.
Type of Rare Cancer: Multiple Myeloma
Email: viorica@myeloma.ro
Phone: 0040 216506625
Website: http://www.myeloma.ro
Address: Blvd Averescu No.17 Sector 1 BUCURESTI

Spain

Organisation Name: ACHE - Asociación Española Contra la Histiocitosis
Organisation Name in English: -
Type of Rare Cancer: Langerhans cell histiocytosis
Email: info@histiocitosis.org
Phone: 34 639139192 
Website: http://www.histiocitosis.org

Address: Avda.de Europa 14, 28224 POZUELO DE ALARCÓN

 

Organisation Name: AEDM - Asociación Española de Enfermos de Mastocitosis
Organisation Name in English: - 
Type of Rare Cancer: Mastocytosis
Email: aedm@desinsl.com
Phone: 34 916 097 289
Website: http://www.aedm.org
Address: Calle Los Metales (Pol. Industrial "La Fraila") 18, 28970 MADRID

UK

Organisation Name: The ​CML Support Group
Organisation Name in English: n.a.
Type of Rare Cancer: Chronic Myeloid Leukaemia
Email: cmlsupportgroup@gmail.com
Phone: n.a.
Website: http://www.cmlsupport.org.uk

Address: ​2 Belgrave Road, London E17 8QE

 

Organisation Name: Leukaemia CARE
Organisation Name in English: n.a.
Type of Rare Cancer: MDS, Neoplasms
Email: care@leukaemiacare.org.uk
Phone: 0044 (0)1905 755 977
Website: http://www.leukaemiacare.org.uk/

Address: One Birch Court, Blackpole East, WORCESTER WR3 8SG

 

Organisation Name: Lymphoma Association
Organisation Name in English: n.a.
Type of Rare Cancer: Lymphomas
Email: J.Pearce@lymphomas.org.uk
Phone: 0044 (0)1296 619400
Website: http://www.lymphomas.org.uk

Address: Lymphoma Association, PO Box 386 Aylesbury, HP20 2GA

 

Organisation Name: MDS (Myelodysplastic Syndrome) UK Patient Support Group
Organisation Name in English: n.a.
Type of Rare Cancer: MDS
Email: mds-uk@mds-foundation.org
Phone: 0044 (0)207 733 7558
Website: http://www.mdspatientsupport.org.uk

Address: Bessemer Wing, King’s College Hospital, Denmark Hill, LONDON SE5 9RS

 

Organisation Name: Myeloma UK
Organisation Name in English: n.a.
Type of Rare Cancer: Myeloma
Email: myelomauk@myeloma.org.uk
Phone: 0044 (0) 131 557 3332
Website: http://www.myeloma.org.uk

Address: Broughton House, 31 Dunedin Street, Edinburgh, EH7 4JG

 

Organisation Name: The Histiocytosis Research Trust
Organisation Name in English: n.a.
Type of Rare Cancer: Histiocytosis
Email: info@hrtrust.org
Phone: 0044 (0)7850 740241
Website: n.a.

Address: Litton House, Saville Road, Peterborough, PE3 7PR

 

Organisation Name: WM UK - Waldenstrom's Macroglobulinemia UK
Organisation Name in English: n.a.
Type of Rare Cancer: Waldenström macroglobulinemia
Email: info@wmuk.org.uk
Phone: 44 (0)117 3735 733
Website: http://www.wmuk.org.uk/index.php
Address: 47 Longfield Road, St Andrew's, BRISTOL BS7 9AG

Head and Neck

Denmark

Organisation Name: Hoved hal scancer
Organisation Name in English: -
Type of Rare Cancer: Head and Neck
Email: jette.balslev@gmail.com
Phone: 0045 3333 9225 or 0045 4034 6838
Website: n.a.
Address: Østersøvej 14, 4673 Rødvig Stevns

Greece

Organisation Name: Πανελλήνιος Σύλλογος Λαρυγγεκτομηθέντων
Organisation Name in English: Pan-Hellenic Association of Laryngectomees
Type of Rare Cancer: Laryngectomy
Email: pan_syla@yahoo.gr
Phone: 0030 2104186341 (Secretary)
Website: http://pansyla.blogspot.be/
Address: Leosthenous 21-23, Pireas 18536

 

Organisation Name: Όμιλος Εθελοντών κατά του Καρκίνου- ΑγκαλιάΖΩ
Organisation Name in English: Society of Volunteers Against Cancer (AgaliaZO)
Type of Rare Cancer: Larynx
Email: oekk@otenet.gr
Phone: 0030 2104181641
Website: http://www.oekk.gr/
Address: Leosthenous 21-23, Pireas 18536

Italy

Organisation Name: Associazione Italiana Laringectomizzati (AILAR)
Organisation Name in English: Italian Laryngectomees Association
Type of Rare Cancer: Head and Neck
Email: ass.it.laringect@virgilio.it
Phone: 0039 (0)2 5510819
Website: http://www.ailar.it/

Address: Via Fruili, 28 Milano

 

Organisation Name: FIALPO
Organisation Name in English: Italian Federation of H&N Advocacy Groups
Type of Rare Cancer: Head and neck
Email: segr.formazione.aioc@e-cremona.it 
Phone: 0039 (0)45 561789 / 0039 372 405185
Website: http://www.fialpo.it/
Address: Via Fratelli Rosselli, 11 - 37138 Verona

UK

Organisation Name: Mouth Cancer Foundation
Organisation Name in English: n.a.
Type of Rare Cancer: Mouth Cancer, Head and Neck Cancers
Email: info@mouthcancerfoundation.org - This email address is being protected from spambots. You need JavaScript enabled to view it.
Phone: 0044 (0)1924 950 950
Website: http://www.mouthcancerfoundation.org/

Address: Top Floor, 1 Victoria Parade, By 331 Sandycombe Road, Kew, Richmond, Surrey, TW9 3NB

 

Organisation Name: The Ipswich Head & Neck Cancer
Organisation Name in English: n.a.
Type of Rare Cancer: Head and neck cancer in general
Email: ipsheadandneckcsg@yahoo.co.uk
Phone: 0044 (0)1473 704361
Website: http://www.theipswichheadandneckcsg.org.uk/
Address: n.a.

Intrathoracic Organs

 

International and European Organisations

Organisation Name: The European Lung Foundation (ELF)
Organisation Name in English: n.a.
Type of Rare Cancer: Rare types of Lung Cancer
Email: Sarah.Masefield@europeanlung.org
Phone: 0044 (0)114 267 2875
Website: http://www.europeanlung.org/en/
Address: 442 Glossop Road, Sheffield S10 2PX


Neuroendocrine Tumours

Belgium

Organisation Name: NET & MEN Kanker België vzw
Organisation Name in English: -
Type of Rare Cancer: Neuroendocrine Tumours
Email: info@net-men-kanker.be
Phone: 0032 471 217754
Website: http://www.net-men-kanker.be/
Address: Franchommelaan 124/F6, 8370 BLANKENBERGE

Bulgaria

Organisation Name: Асоциация на пациентите с онкологични заболявания АПОЗ
Organisation Name in English: Association of patients with cancer APOZ
Type of Rare Cancer: NET
Email: adarska@gmail.com
Phone: 00359 879815800 / (0)879 815 801
Website: http://oncobg.info
Address: 1000, София, ул. Стефан Караджа 24, ет. 2 офис 7

Germany

Organisation Name: BS-NET - Bundesorganisation Selbsthilfe NeuroEndokrine Tumoren e.V.
Organisation Name in English: -
Type of Rare Cancer: Neuroendocrine Tumours
Email: info@net-shg.de
Phone: (030) 23 63 16 45 or 49 (0)30 41 99 4804
Website: http://www.net-shg.de/

Address: Ansbacher Straße 47, 10777 Berlin

 

Organisation Name: Netzwerk Neuroendokrine Tumoren (NeT) e.V.
Organisation Name in English: -
Type of Rare Cancer: Neuroendocrine Tumours
Email: info@netzwerk-net.de
Phone: 0049 (0)911 2528999
Website: www.netzwerk-net.de
Address: Wörnitzstraße 115a, 90449 NÜRNBERG

Italy

Organisation Name: A.I.NET. Vivere la Speranza - Amici di Emanuele Cicio ONLUS
Organisation Name in English: -
Type of Rare Cancer: Neuroendocrine Tumours
Email: info@viverelasperanza.org
Phone: 0039 (0)742 379614
Website: www.viverelasperanza.org
Address: Piazzetta Don Brizio Casciola, 6/7 - 06036 Montefalco (Perugia)

Netherlands

Organisation Name: Stichting NET-groep
Organisation Name in English: -
Type of Rare Cancer: Neuroendocrine Tumours
Email: info@net-kanker.nl
Phone: 0031 (0)6 8359 0027
Website: http://www.net-kanker.nl/
Address: Rosa Spierstraat 161, 2135 TS Hoofddorp

Norway

Organisation Name: CarciNor, Nevroendokrin kreft
Organisation Name in English: CarciNor, Neuroendocrine Tumors
Type of Rare Cancer: Neuroendocrine Tumours
Email: post@carcinor.no
Phone: 0047 21 420 680
Website: http://www.carcinor.no/
Address: Rådhusgaten 4, Oslo, Norway

UK

Organisation Name: NET Patient Foundation - National Charity for all NET
Organisation Name in English: n.a.
Type of Rare Cancer: Neuroendocrine tumours
Email: catherine@netpatientfoundation.org
Phone: +44 (0)01564 785577 and Helpline: 0800 434 6476
Website: www.netpatientfoundation.org

Address: Boxtrees Farm, The Farm House,Stratford Road, Hockley Heath B94 6EA

 

Organisation Name: Pancreatic Cancer UK
Organisation Name in English: n.a.
Type of Rare Cancer: Pancreatic Neurendocrine tumours
Email: anna@pancreaticcancer.org.uk
Phone: 0044 (0)20 3535 7090 - (0)20 3535 7099 (Support line)
Website: http://www.pancreaticcancer.org.uk/
Address: 2nd Floor, Camelford House, 89 Albert Embankment, London SE1 7TW

Non Skin Melanoma

UK

Organisation Name: Melanoma focus
Organisation Name in English: n.a.
Type of Rare Cancer: Rare types of melanoma
Email: rodwell@melanomafocus.com
Phone: 0044 (0)161 918 7444
Website: http://melanomafocus.com/
Address: Melanoma Focus, Queen Anne House, Gonville Place, Cambridge CB1 1ND

Soft Tissue Sarcomas / GIST

International and European Organisations

Organisation Name: Sarcoma Patients EuroNet e.V./Assoc (SPAEN)
Organisation Name in English: 
Type of Rare Cancer: Sarcomas/ GIST /Desmoid
Email: info@sarcoma-patients.eu
Phone: n.a.
Website: http://www.sarcoma-patients.eu/index.php/group-locator

Address: Am Rothenanger 1b D-85521 Riemerling / Germany

Austria

Organisation Name: Das Lebenshaus e.V. - Österreichischen Selbsthilfegruppe Anlaufstelle
Organisation Name in English: Das Lebenshaus e.V. - Austrian contact point
Type of Rare Cancer: GIST
Email: kh.riedl@aon.at
Phone: 0043 (0)5279 5253
Website: n.a.

Address: Leite 93, 6354 SANKT JODOK

 

Organisation Name: GIST Support Österreich
Organisation Name in English: -
Type of Rare Cancer: GIST
Email: rainer.sawdyk@gmx.at / kontakt@gistsupport.at
Phone: n.a.
Website: http://www.gistsupport.at/
Address: n.a.

Bulgaria

Organisation Name: Сдружение на пациентите с ГИСТ в България
Organisation Name in English: GIST Alliance for Patients - Bulgaria
Type of Rare Cancer: GIST
Email: info@gist-bg.com
Phone: 00359 888 585 366 (personal dont have office)
Website: http://www.gist-bg.com/
Address: Nadejda I, 103, B, 66, Sofia

France

Organisation Name: ASD - Association SOS Desmoïde
Organisation Name in English: -
Type of Rare Cancer: Desmoid
Email: association.sos-desmoide@laposte.net
Phone: n.a.
Website: http://www.sos-desmoide.asso.fr/
Address: 45 Rue René La Combe, 49100 ANGERS

 

Organisation Name: Info Sarcomes

Organisation Name in English: -
Type of Rare Cancer: Sarcomas
Email: info@sarcomes.org
Phone: n.a.
Website: http://www.infosarcomes.org/
Address: 6 Cour des alliés, 35000 RENNES

Germany

Organisation Name: Das Lebenshaus e.V.
Organisation Name in English: The House of Life
Type of Rare Cancer: GIST/Sarcomas
Email: wartenberg@lebenshauspost.org / info@lebenshauspost.org
Phone: 0049 (0)700 4884 0700
Website: http://www.daslebenshaus.org/index.php

Address: Usa-Strasse 1, 61231 BAD NAUHEIM

 

Greece

Organisation Name: Όμιλος Εθελοντών κατά του Καρκίνου- ΑγκαλιάΖΩ
Organisation Name in English: Society of Volunteers Against Cancer (AgaliaZO)
Type of Rare Cancer: GIST
Email: oekk@otenet.gr
Phone: 0030 2104181641
Website: http://www.oekk.gr/
Address: Leosthenous 21-23, Pireas 18536

Hungary

Organisation Name: CML és GIST Betegek Egyesülete
Organisation Name in English: CML and GIST Patient Advocacy
Type of Rare Cancer: GIST
Email: cmlgist@cmlgist.hu
Phone: 0036 (0)6 20 33 83 331
Website: http://cmlgist.hu/
Address: 6800 Hódmezővásárhely, Medgyessy Ferenc utca 6/C fszt. 6.

Italy

Organisation Name: A.I.G. ASSOCIAZIONE ITALIANA GIST

Organisation Name in English: The Italian Association of GIST
Type of Rare Cancer: GIST
Email: barbaratamagni@yahoo.it
Phone: 0039 3331009951
Website: http://www.gistonline.it
Address: Fondazione IRCCS Istituto Nazionale dei Tumori, Via Venezian 1, 20133 Milano

Netherlands

Organisation Name: Contactgroep GIST Nederland - België
Organisation Name in English: The Belgium GIST Contact group
Type of Rare Cancer: GIST
Email: info@contactgroepgist.nl / havero43@hotmail.com
Phone: 0031 (0)30 291 60 90 / Helpine: (0800) 0226622
Website: http://www.contactgroepgist.nl
Address: PO Box 8152 3503 RD Utrecht

Norway

Organisation Name: Sarkomer Norway
Organisation Name in English: -
Type of Rare Cancer: Sarcomas and GIST
Email: oddandreas@yahoo.no
Phone: n.a.
Website: http://sarkomer.no/
Address: n.a.

Poland

Organisation Name: Stowarzyszenie Pomocy Chorym na Miesaki Sarcoma
Organisation Name in English: Patients Aid Association for Sarcoma
Type of Rare Cancer: Sarcoma
Email: kamil.dolecki@sarcoma.pl
Phone: 0048 608 33 53 26
Website: http://www.sarcoma.pl/
Address: ul. Malborska 14/5, 03-286 Warszawa

 

Organisation Name: Stowarzyszenie Pomocy Chorym Na Gist

Organisation Name in English: Patients with GIST Aid Association
Type of Rare Cancer: GIST
Email: m.szachowski@gist.pl
Phone: 0048 22 832 21 03
Website: http://www.gist.pl/
Address: ul. Potocka 14, 01 652 Warszawa

Romania

Organisation Name:  Romanian GIST Network - Extended to sarcoma patients
Organisation Name in English: Romanian GIST Network - Extended to sarcoma patients
Type of Rare Cancer: GIST and gynecologic sarcoma
Email: si_mi_ene@yahoo.com
Phone: n.a.
Website: Not available yet
Address: n.a.

Switzerland

Organisation Name: GIST - Gruppe Schweiz - Groupe GIST Suisse
Organisation Name in English: -
Type of Rare Cancer: GIST
Email: helga.meier@bluewin.ch
Phone: 41 (0)41 710 80 58
Website: n.a.
Address: Sterenweg 7, 6300 ZUG

UK

Organisation Name: GIST Support UK
Organisation Name in English: n.a.
Type of Rare Cancer: Gastrointestinal stromal tumor
Email: admin@gistsupportuk.com
Phone: 0044 (0)7714346241/(0)7743400764
Website: www.gistsupportUK.com
Address: n.a.

 

Organisation Name: “PAWS-GIST” (Paediatric Adolescent Wildtype Syndromic-GIST)

Organisation Name in English: n.a.
Type of Rare Cancer: Paediatric Adolescent Wildtype Syndromic-GIST
Email: info@paws-gist.org.uk
Phone: 0044 (0)7714346241/(0)7743400764
Website: http://www.gistsupportUK.com/paediatric_paws.htm

Address: n.a.

 

Organisation Name: Sarcoma UK

Organisation Name in English: n.a.
Type of Rare Cancer: Sarcoma
Email: info@sarcoma.org.uk
Phone: 0044 (0)20 7250 8271
Website: www.sarcoma.org.uk
Address: 49-51 East Road, London, N1 6AH

Bone Sarcomas

International and European Organisations

Organisation Name: Chordoma Foundation Europe
Organisation Name in English: n.a.
Type of Rare Cancer: Chordoma
Email: hans@chordoma.org
Phone: 0031 (0)6 250 950 25
Website: http://www.chordoma.org

Address: n.a.

Italy

Organisation Name: Associazione Fabrizio Ripa ONLUS
Organisation Name in English: -
Type of Rare Cancer: Ewing's Sarcoma
Email: info@fabrizioripa.org
Phone: 0039 090337499
Website: http://www.fabrizioripa.org/
Address: piazza Salvo D'Acquisto, 4 - 98049 Villafranca Tirrena (ME)

Netherlands

Organisation Name: HME-MO Vereniging Nederland
Organisation Name in English: - 
Type of Rare Cancer: Multiple osteochondromas
Email: info@hme-mo.nl
Phone: 0031 (0)516 45 1760
Website: http://www.hme-mo.nl/

Address: Geert Lammertslaan 8, 8421 RT OLDEBERKOOP

UK

Organisation Name: Bone Cancer Research Trust

Organisation Name in English: n.a.
Type of Rare Cancer: Osteosarcoma and Ewing’s sarcoma
Email: info@bcrt.org.uk
Phone: 0044 (0)113 258 5934
Website: http://www.bcrt.org.uk

Address: 10 Feast Field, Horsforth, Leeds LS18 4TJ

 

Organisation Name: Guy Francis Bone Cancer Research Fund

Organisation Name in English: n.a.
Type of Rare Cancer: Bone sarcoma
Email: mike.francis@gfbonecancer.org.uk
Phone: 0044 (0)1904 799151 
Website: http://www.gfbonecancer.org.uk/

Address: Acomb House 23, Front Street, Acomb, York, YO24 3BW 

Urinary Tract

France

Organisation Name: ARTuR - Association pour la Recherche sur les Tumeurs du Rein
Organisation Name in English: Kidney Cancer Research Association
Type of Rare Cancer: Rare renal tumor
Email: asso-artur@artur-rein.org
Phone: 33 (0)1 42 11 54 10
Website: http://www.artur-rein.org/large.asp
Address: 114 rue Edouard Vaillant, 94805 VILLEJUIF CEDEX

 

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