Patient Organisations by Country
Brain Tumours
Organisation Name: International Brain Tumour Alliance (IBTA)
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
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
Haematological Tumours
Organisation Name: European Waldenström’s Macroglobulinemia Network
Type of Rare Cancer: Waldenström macroglobulinemia
Email: moom@planet.nl / secretary@ewmnetwork.eu
Phone: 0031 73 5217643
Website: http://www.ewmnetwork.eu
Organisation Name: CML Advocates Network / Leukemia Patient Advocates Foundation
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
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
Intrathoracic Organs
Organisation Name: The European Lung Foundation (ELF)
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
Sarcomas
Organisation Name: Sarcoma Patients EuroNet e.V./Assoc (SPAEN)
Type of Rare Cancer: Sarcomas/ GIST /Desmoid
Email: info@sarcoma-patients.eu
Website: http://www.sarcoma-patients.eu/index.php/group-locator
Address: Am Rothenanger 1b D-85521 Riemerling / Germany
Bone Cancers
Organisation Name: Chordoma Foundation Europe
Type of Rare Cancer: Chordoma
Email: hans@chordoma.org
Phone Number: 0031 (0)6 250 950 25
Website:http://www.chordoma.org
Sarcomas / GIST
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
Address: Leite 93, 6354 SANKT JODOK
Organisation Name: GIST Support Österreich
Type of Rare Cancer: GIST
Email: rainer.sawdyk@gmx.at
Website: Brand new webpage under construction
Haematological Tumours
Organisation Name: Myelom- und Lymphomhilfe Österreich
Type of Rare Cancer: Multiple Myeloma/Lymphoma
Email: elfi.jirsa@myelom-lymphom.at
Phone Number: 0043 (0)664 38 54 161
Website:http://www.myelom-lymphom.at/
Address: Hervicusgasse 2/19, 1120 WIEN
Male Genital Organs
Organisation Name: Plattform Hodenkrebs Austria
Type of Rare Cancer: Testicular Cancer
Email: oth@hodenkrebs.at
Phone Number: 0043 (0)699 11518135
Website:http://www.hodenkrebs.at/
Address: Korngasse 11/2/6, 2405 BAD DEUTSCH-ALTENBURG
Brain Tumours
Organisation Name: CAN Cé-TU? asbl [Région Wallonie – Bruxelles]
Type of Rare Cancer: CNS
Email: info@cancetuasbl.be
Phone Number: 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 Tumour
Email:info@wg-hersentumoren.be
Phone Number: 0032 495 303 511
Website:http://www.wg-hersentumoren.be/site_en/about.php
Address: Gasstraat 5 – B-2950 Kapellen
Haematological Tumours
Organisation Name: CMP Vlaanderen vzw – Contactgroep Multipel Myeloom Patiënten Vlaanderen vzw
Type of Rare Cancer: Multiple myeloma
Email: info@cmp-vlaanderen.be
Phone Number: 0031 (0)89-354366
Address: Chemin du Lanternier 26, 1380 LASNE
Organisation Name: LCH-Belgium – Langerhans cel Hystiocytosis Belgium vzw/asbl
Type of Rare Cancer: Langherans cell histiocytosis
Email: karelhenderickx@hotmail.com
Phone Number: 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: Lymphomas
Email: info.lymfklierkanker@gmail.com
Phone Number: 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)
Type of Rare Cancer: Multiple myeloma
Email: b.beaume@skynet.be
Phone Number: 0032 (0)81/211937
Website:www.myelome.be
Address: Avenue Montgomery 12, 7500 Tournai
Neuroendocrine Tumours
Organisation Name: NET & MEN Kanker België vzw
Type of Rare Cancer: Neuroendocrine Tumours
Email: info@net-men-kanker.be
Phone Number: 0032 471 217754
Website: http://www.net-men-kanker.be/
Address: Franchommelaan 124/F6, 8370 BLANKENBERGE
All Cancers
Organisation Name: Национална пациентска организация
Organisation Name in English: National patients organization
Type of Rare Cancer: All Cancers
Email: asengeo@abv.bg
Phone Number: 00359 893555961 / 00359 (0) 2 958 95 19
Website:http://www.npo.bg/
Address: Sofia 1142, Lyuben Karavelov ? 3, 3rd floor, ap. 5
Sarcomas / GIST
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 Number: 00359 888 585 366 (personal dont have office)
Website:http://www.gist-bg.com/
Address: Nadejda I, 103, B, 66, Sofia
Endocrine Tumours
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
Haematological Tumours
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 Myeloid Leukaemia (CML)
Email: hml@abv.bg
Phone Number: 00359 899123909
Website: http://www.hml-bg.com/
Address: Mladost 321V, apt. 8, Lovech
Organisation Name: BSL – Bulgarsko Sdruzhenie Limfom
Organisation Name in English: BSL – Bulgarian Lymphoma Patients’ Association
Type of Rare Cancer: Lymphomas
Email:info@lymphom-bg.com
Phone Number: 00359 (0)2 866 47 00
Website:http://www.lymphom-bg.com/
Address: 15 “Cherni vruh” blvd, 1000 SOFIA
Neuroendocrine Tumours
Organisation Name: Асоциация на пациентите с онкологични заболявания АПОЗ
Organisation Name in English: Association of patients with cancer APOZ
Type of Rare Cancer: Neuroendocrine Tumours
Email: adarska@gmail.com
Phone Number: 00359 879815800 / (0)879 815 801
Website:http://oncobg.info
Address: 1000, София, ул. Стефан Караджа 24, ет. 2 офис 7
Haematological Tumours
Organisation Name: Hrvatska udruga leukemija i limfomi (HULL)
Organisation Name in English: Croatian Leukaemia and Lymphoma Society (HULL)
Type of Rare Cancer: Leukaemia / Lymhoma
Email: zagreb.hull@gmail.com
Phone Number: 385 1 4873 561 (mobile)
Website:http://www.hull.hr/
Haematological Tumours
Organisation Name: Ceská myelomová skupina, nadacní fond
Organisation Name in English: Czech Myeloma Group Foundation
Type of Rare Cancer: Multiple Myeloma
Email: cmg@myeloma.cz
Phone Number: 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 Leukemia
Type of Rare Cancer: Chronic Myeloid Leukemia
Email: janapel@centrum.cz
Phone Number: 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 Number: 420 603310523
Website:http://www.mnohocetnymyelom.cz/
Address: Kamenice 5, 62500 BRNO
Head and Neck
Organisation Name: Hoved hal scancer
Type of Rare Cancer: Head and Neck
Email: jette.balslev@gmail.com
Phone Number: 0045 3333 9225 or 0045 4034 6838
Address: Østersøvej 14, 4673 Rødvig Stevns
Haematological Tumours
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 Number: 0045 4733 3501
Website:http://www.pv-foreningen.dk/
Address: Spurvevej 9, 3550 Slangerup
Endocrine Tumours
Organisation Name: Aivolisäke-potilasyhdistys Sella ry
Type of Rare Cancer: Pituitary tumours
Email: piritta.ruuska@gmail.com
Website:http://www.sellanet.com/
Address: Sepeteuksentie 1, 00760 HELSINKI
Brain Tumours
Organisation Name: GFME – Glioblastome Association Michèle Esnault
Type of Rare Cancer: Glioblastoma
Email:gfme@free.fr
Phone Number: 33 (0)4 91 64 55 86
Website:http://gfme.free.fr/
Address: 22 Boulevard Camille Flammarion, 13001 MARSEILLE
Digestive organs
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 Number: 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
Endocrine Tumours
Organisation Name: APTED – Association des Patients porteurs de Tumeurs Endocrines Diverses
Type of Rare Cancer: Endocrine Tumours
Email: contact@apted.fr
Phone Number: 33 (0)1 43 67 59 17
Website:http://www.apted.fr/Pages/default.aspx
Address: 162, avenue Lacassagne, 69424 Lyon
Haematological Tumours
Organisation Name: AFIRMM – Association Française pour les Initiatives de Recherche sur les Mastocytes et les Mastocytoses
Type of Rare Cancer: Mastocytosis
Email:contact@afirmm.com
Phone Number: 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
Type of Rare Cancer: MDS, Essential Thrombocythemia, CML
Email:contact@alte-asso.org
Phone Number: 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
Type of Rare Cancer: Leukaemia
Email:giuseppinadileo@laurettefugain.org
Website:http://www.laurettefugain.org/
Address: 101 Rue des Sevres, 75279 Paris CEDEX 06
Organisation Name: Connaître et Combattre les Myélodysplasies (CCM)
Type of Rare Cancer: MDS
Email:associationccm@yahoo.fr
Phone Number: 33 (0)6 37 22 79 87
Website: www.myelodysplasies.org
Address: 19, rue de l’Estrapade, 75005 Paris
Organisation Name: France Lymphome Espoir
Type of Rare Cancer: Lymphomas
Email:infos@francelymphomeespoir.fr
Phone Number: 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
Type of Rare Cancer: Chronic Myeloid Leukaemia
Email:contact@lmc-france.fr
Phone Number: 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
Type of Rare Cancer: Waldenström macroglobulinemia
Email:danielgr@noos.fr
Phone Number: 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
Type of Rare Cancer: Waldenström macroglobulinemia
Email:contact@waldenstromfrance.org
Phone Number: 33 (0)4 90 87 09 30
Website:http://portail.waldenstromfrance.org/
Address: 2 Rue Hernandes de Heredia, 84000 AVIGNON
Sarcomas / GIST
Organisation Name: ASD – Association SOS Desmoïde
Type of Rare Cancer: Desmoid
Email:association.sos-desmoide@laposte.net
Website:http://www.sos-desmoide.asso.fr/
Address: 45 Rue René La Combe, 49100 ANGERS
Organisation Name: Info Sarcomes
Type of Rare Cancer: Sarcoma
Email:info@sarcomes.org
Website:http://www.infosarcomes.org/
Address: 6 Cour des alliés, 35000 RENNES
Urinary Tract
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 tumors
Email: emmanuel.ungauer@interview-efm.com
Phone Number: 33 (0)1 42 11 54 10
Website:http://www.artur-rein.org/large.asp
Address: 114 rue Edouard Vaillant, 94805 VILLEJUIF CEDEX
Sarcomas / GIST
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
Digestive organs
Organisation Name: TEB e.V. Selbsthilfe
Type of Rare Cancer: Pancreatic tumours
Email:geschaeftsstelle@teb-selbsthilfe.de
Phone Number: 0049 (0)7141 95 63636
Website:http://www.teb-selbsthilfe.de/
Address: Ruhrstrasse 10/1, 71636 LUDWIGSBURG
Endocrine Tumours
Organisation Name: Netzwerk Hypophysen- und Nebennierenerkrankungen e.V.
Type of Rare Cancer: Endocrine Tumours
Email: netzwerk@glandula-online.de
Phone Number: 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 Tumours
Email:harald.rimmele@sd-krebs.de
Phone Number: 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 Tumours
Email:info@schilddruesenliga.de
Phone Number: 0049 (0)228 386 9060 / (0)228 3779287 (Chairman)
Website:http://www.schilddruesenliga.de/home.html
Address: Waldstr. 73, 53177 BONN
Female Genital Organs
Organisation Name: VulvaKarzinom Selbsthilfegruppe e.V.
Type of Rare Cancer: Vulvar cancer
Email:info@vulvaKarzinom-shg.de
Phone Number: 0049 (0)4421972281
Website:http://vulvakarzinom-shg.de/board/content.php
Address: Kniprodestr 94, 26388 WILHELMSHAVEN
Haematological Tumours
Organisation Name: EHX – Erwachsenen-Histiozytose-X e.V.
Type of Rare Cancer: Langerhans cell histiocytosis
Email:d.kauschka@ehx-ev.de
Phone Number: 0049 (0)201 488990
Address: Langenberger Str. 805, 45257 ESSEN
Organisation Name: Histiozytosehilfe e.V.
Type of Rare Cancer: Langerhans cell histiocytosis
Email:info@histiozytose.org
Phone Number: 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 Number: 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
Type of Rare Cancer: Leukaemia
Email:info@leukaemie-online.de
Website:http://www.leukaemie-online.de/
Organisation Name: Leukämiehilfe RHEIN-MAIN
Type of Rare Cancer: Leukaemia
Email:a.waldmann@LHRM.de
Phone Number: 0049 (0)6142 32123
Website:http://www.leukaemiehilfe-rhein-main.de/
Address: Falltorweg 6, D-65428 Rüsselsheim
Organisation Name: Mastozytose e.V.
Type of Rare Cancer: Mastocytosis
Email:vorstand@mastozytose.de
Phone Number: 0049 (0)7951 45431
Website:http://www.mastozytose.de/
Address: Ingersheimer Weg 2, 74564 CRAILSHEIM
Organisation Name: MDS Patienten Interessen Gemeinschaft
Type of Rare Cancer: MDS
Email:b.kuhle@t-online.de
Phone Number: 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.
Type of Rare Cancer: Myeloproliferative neoplasm
Email: info@mpd-netzwerk.de
Phone Number: 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
Type of Rare Cancer: Essential Thrombocythemia, Polycythemia Vera
Email: gfhamel@t-online.de
Phone Number: 0049 (0)4141 63709
Website: http://www.polyzythaemie.de/
Address: Brauerstr. 43, 21680 STADE
Neuroendocrine Tumours
Organisation Name: BS-NET – Bundesorganisation Selbsthilfe NeuroEndokrine Tumoren e.V.
Type of Rare Cancer: Neuroendocrine Tumours
Email: nfo@net-shg.de
Phone Number: (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.
Type of Rare Cancer: Neuroendocrine Tumours
Email: info@netzwerk-net.de
Phone Number: 0049 (0)911 2528999
Website: www.netzwerk-net.de
Address: Wörnitzstraße 115a, 90449 NÜRNBERG
All Cancers
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 Cancer Types
Email: info@anticancerath.gr
Phone Number: 0030 210 6468 222/ 0030 210 6447 002
Website: http://www.anticancerath.gr/
Address: Aitolias 33-35, 115 23 Athens (2nd Floor)
Organisation Name: ΜΕΙΝΕ ΔΥΝΑΤΟΣ
Organisation Name in English: “Be Strong” – Association of cancer patients
Type of Rare Cancer: All Cancer Types
Email: info@bestrong.org.gr
Phone Number: 0030 210 86 200 85/ 0030 6932 209001 (mobile)
Website: http://www.bestrong.org.gr/
Address: Agias Zonis 1A, Kipseli, Athens 113 61
Haematological Tumours
Organisation Name: Artemis – Association on Histiocytosis
Type of Rare Cancer: Langerhans cell histiocytosis
Email: info@histioartemis.gr
Phone Number: 0030 210 452 0453
Website:http://www.histioartemis.gr/Index.asp?a_id=1
Address: 10 Skoule 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: Waldenstrom macroglobulinemia
Email: oekk@otenet.gr
Phone Number: 0030 2104181641
Website:http://www.oekk.gr/
Address: Leosthenous 21-23, Pireas 18536
Sarcomas / GIST
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 Number: 0030 2104181641
Website:http://www.oekk.gr/
Address: Leosthenous 21-23, Pireas 18536
Head and Neck
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 Number: 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 Cancer
Email: oekk@otenet.gr
Phone Number: 0030 2104181641
Website:http://www.oekk.gr/
Address: Leosthenous 21-23, Pireas 18536
Haematological Tumours and Sarcomas / GIST
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 Number: 0036 (0)6 20 33 83 331
Website:http://cmlgist.hu/
Address: 6800 Hódmezovásárhely, Medgyessy Ferenc utca 6/C fszt. 6.
Brain Tumours
Organisation Name: A.I.T.C. Associazione Italiana Tumori Cerebrali Onlus
Organisation Name in English: AITC
Type of Rare Cancer: Brain, CNS
Email:info@tumoricerebrali.it
Phone Number: 0039 339 6899349
Website:http://www.tumoricerebrali.it/
Address: via Stefano Canzio, 10 – 20131 Milano
Organisation Name: Italia Glioblastoma Multiforme – cancro al cervello
Type of Rare Cancer: Glioblastoma
Email:iosim@hotmail.it
Phone Number: 0039 3270859967
Website:https://www.facebook.com/groups/italia.glioblastoma.multiforme/
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 Number: 0039 106018938
Website:www.neuroblastoma.org
Address: Largo G. Gaslini, 5 – 16148 GENOVA
Sarcomas / GIST
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 Number: 0039 3331009951
Website:http://www.gistonline.it
Address: Fondazione IRCCS Istituto Nazionale dei Tumori, Via Venezian 1, 20133 Milano
Female Genital Organs
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 Number: 0039 (0) 370 7054294
Website:http://www.actoonlus.it
Address: Via Marsala 11 – 20121 Milano
Head and Neck
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 Number: 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 Number: 0039 (0)45 561789 / 0039 372 405185
Website:http://www.fialpo.it/
Address: Via Fratelli Rosselli, 11 – 37138 Verona
Haematological Tumours
Organisation Name: AIRI LCH – Associazione Italiana Ricerca Istiocitosi a Cellule di Langerhans – ONLUS
Type of Rare Cancer: Langerhans cell histiocytosis
Email: onlus@istiocitosi.org
Phone Number: 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 Number: 0039 (0)6 703 8601
Website:http://www.lmconline.it/
Neuroendocrine Tumours
Organisation Name: A.I.NET. Vivere la Speranza – Amici di Emanuele Cicio ONLUS
Type of Rare Cancer: Neuroendocrine Tumours
Email:info@viverelasperanza.org
Phone Number: 0039 (0)742 379614
Website:www.viverelasperanza.org
Address: Piazzetta Don Brizio Casciola, 6/7 – 06036 Montefalco (Perugia)
Sarcomas
Organisation Name: Associazione Fabrizio Ripa ONLUS
Type of Rare Cancer: Ewing’s Sarcoma
Email: info@fabrizioripa.org
Phone Number: 0039 090337499
Website:http://www.fabrizioripa.org/
Address: piazza Salvo D’Acquisto, 4 – 98049 Villafranca Tirrena (ME)
Bone Tumours
Organisation Name: HME-MO Vereniging Nederland
Organisation Name in English:
Type of Rare Cancer: Multiple osteochondromas
Email:info@hme-mo.nl
Phone Number: 0031 (0)516 45 1760
Website:http://www.hme-mo.nl/
Address: Geert Lammertslaan 8, 8421 RT OLDEBERKOOP
Brain Tumours
Organisation Name: Stichting STOPhersentumoren.nl
Organisation Name in English:
Type of Rare Cancer: Brain Tumours
Email:info@stophersentumoren.nl
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 Number: 0031 (0)30 296 6575
Website:http://www.cerebraal.nl/
Address: Palestrinastraat 1b, 3533 EH, UTRECHT
Sarcomas / GIST
Organisation Name: Contactgroep GIST Nederland – België
Organisation Name in English: The Netherlands/Belgium GIST Contact group
Type of Rare Cancer: GIST
Email: info@contactgroepgist.nl / secretaris@contactgroepgist.nl
Phone Number: 0031 (0)30 291 60 90 / Helpine: (0800) 0226622
Website:http://www.contactgroepgist.nl
Address: PO Box 8152 3503 RD Utrecht
Neuroendocrine Tumours
Organisation Name: Stichting NET-groep
Type of Rare Cancer: Neuroendocrine Tumours
Email:info@net-kanker.nl
Phone Number: 0031 (0)6 8359 0027
Website:http://www.net-kanker.nl/
Address: Rosa Spierstraat 161, 2135 TS Hoofddorp
Haematological Tumours
Organisation Name: Histiocytose Nederland
Type of Rare Cancer: Histiocytosis
Email:secretariaat@histio.nl
Phone Number: 0031 (0)6 1041 7340
Website:http://www.histio.nl/
Address: Ypendael 3, 3743 AW, BAARN
Organisation Name: MPN Stichting – Myeloproliferatieve Neoplasieën Stichting
Type of Rare Cancer: Myelofibrosis with myeloid metaplasia
Email: info@mpn-stichting.nl
Phone Number: 0031 (0)88 0074 300 (wed: 20h30-21h30)
Website:http://www.mpd-stichting.nl/
Address: Postbus 10496, 6000 GL WEERT
Organisation Name: Stichting Hematon
Type of Rare Cancer: Leukemia, Lymphoma, Multiple myeloma
Email: secretariaat@hematon.nl / info@hematon.nl
Phone Number: 0031 (0)30-291 60 90
Website: http://www.hematon.nl/
Address: Postbus 8152, 3503 RD Utrecht, The Netherlands
Neuroendocrine Tumours
Organisation Name: CarciNor, Nevroendokrin kreft
Organisation Name in English: CarciNor, Neuroendocrine Tumors
Type of Rare Cancer: Neuroendocrine Tumours
Email: post@carcinor.no
Phone Number: 0047 21 420 680
Website:http://www.carcinor.no/
Address: Rådhusgaten 4, Oslo, Tlf. 06380 Postboks 8, Sentrum 0101 Oslo
Sarcomas / GIST
Organisation Name: Sarkomer Norway
Type of Rare Cancer: Sarcoma
Email: oddandreas@yahoo.no
Website:http://sarkomer.no/