International and European Organisations
Brain Tumours
| 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 |
Haematological Tumours
| 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
|
Intrathoracic Organs
| 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 |
Sarcomas
| 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 |
Bone Cancers
| Organisation Name: Chordoma Foundation Europe |
| Organisation Name in English: n.a. |
| Type of Rare Cancer: Chordoma |
| Email: hans@chordoma.org |
| Phone Number: 0031 (0)6 250 950 25 |
| Website:http://www.chordoma.org |
|
Address: n.a. |
Austria
Sarcomas / GIST
| Organisation Name: GIST Support Österreich |
| Organisation Name in English: |
| Type of Rare Cancer: GIST |
| Email: rainer.sawdyk@gmx.at |
| Phone Number: n.a. |
| Website: Brand new webpage under construction |
| Address: n.a. |
Haematological Tumours
| Organisation Name: Myelom- und Lymphomhilfe Österreich |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
Belgium
Brain Tumours
| Organisation Name: CAN Cé-TU? asbl [Région Wallonie - Bruxelles] |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| Type of Rare Cancer: Multiple myeloma |
| Email: info@cmp-vlaanderen.be |
| Phone Number: 0031 (0)89-354366 |
| Website: n.a. |
| Address: Chemin du Lanternier 26, 1380 LASNE |
| Organisation Name: LCH-Belgium - Langerhans cel Hystiocytosis Belgium vzw/asbl |
| Organisation Name in English: |
| 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) |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
Bulgaria
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 |
Croatia
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/ |
| Address: n.a. |
Czech Republic
Haematological Tumours
| 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 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 |
Denmark
Head and Neck
| Organisation Name: Hoved hal scancer |
| Organisation Name in English: |
| Type of Rare Cancer: Head and Neck |
| Email: jette.balslev@gmail.com |
| Phone Number: 0045 3333 9225 or 0045 4034 6838 |
| Website: n.a. |
| 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 |
Finland
Endocrine Tumours
| Organisation Name: Aivolisäke-potilasyhdistys Sella ry |
| Organisation Name in English: |
| Type of Rare Cancer: Pituitary tumours |
| Email: piritta.ruuska@gmail.com |
| Phone Number: n.a. |
| Website:http://www.sellanet.com/ |
| Address: Sepeteuksentie 1, 00760 HELSINKI |
France
Brain Tumours
| Organisation Name: GFME - Glioblastome Association Michèle Esnault |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| Type of Rare Cancer: Leukaemia |
| Email:giuseppinadileo@laurettefugain.org |
| Phone Number: 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 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| Type of Rare Cancer: Desmoid |
| Email:association.sos-desmoide@laposte.net |
| Phone Number: 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: Sarcoma |
| Email:info@sarcomes.org |
| Phone Number: n.a. |
| 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 |
Germany
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 |
| Organisation Name in English: |
| 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. |
| Organisation Name in English: |
| 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. |
| Organisation Name in English: |
| 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. |
| Organisation Name in English: |
| Type of Rare Cancer: Langerhans cell histiocytosis |
| Email:d.kauschka@ehx-ev.de |
| Phone Number: 0049 (0)201 488990 |
| Website: n.a. |
| Address: Langenberger Str. 805, 45257 ESSEN |
|
Organisation Name: Histiozytosehilfe e.V. |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| Type of Rare Cancer: Leukaemia |
| Email:info@leukaemie-online.de |
| Phone Number: n.a. |
| Website:http://www.leukaemie-online.de/ |
| Address: n.a. |
|
Organisation Name: Leukämiehilfe RHEIN-MAIN |
| Organisation Name in English: |
| 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. |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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. |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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. |
| Organisation Name in English: |
| 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. |
| Organisation Name in English: |
| 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 |
Greece
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 |
| Organisation Name in English: |
| 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 |
Hungary
Haematological Tumours
| 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 Hódmezővásárhely, Medgyessy Ferenc utca 6/C fszt. 6. |
Sarcomas / GIST
| 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 Number: 0036 (0)6 20 33 83 331 |
| Website:http://cmlgist.hu/ |
| Address: 6800 Hódmezővásárhely, Medgyessy Ferenc utca 6/C fszt. 6. |
Italy
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 |
| Organisation Name in English: |
| Type of Rare Cancer: Glioblastoma |
| Email:iosim@hotmail.it |
| Phone Number: 0039 3270859967 |
| Website:https://www.facebook.com/groups/italia.glioblastoma.multiforme/ |
| Address: n.a. |
|
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 |
| Organisation Name in English: |
| 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/ |
| Address: n.a. |
Neuroendocrine Tumours
| 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 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 |
| Organisation Name in English: |
| 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) |
Netherlands
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 |
| Phone Number: 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 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
| Organisation Name in English: |
| 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 |
Norway
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 |
| Organisation Name in English: |
| Type of Rare Cancer: Sarcoma |
| Email: oddandreas@yahoo.no |
| Phone Number: n.a. |
| Website:http://sarkomer.no/ |
| Address: n.a. |
Poland
Sarcomas / GIST
| 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 Number: 0048 22 832 21 03 |
| Website:http://www.gist.pl/ |
|
Address: ul. Potocka 14, 01 652 Warszawa
|
| Organisation Name: Stowarzyszenie Pomocy Chorym na Miesaki |
| Organisation Name in English: Patients Aid Association for Sarcomas |
| Type of Rare Cancer: |
| Email: kamil.dolecki@sarcoma.pl |
| Phone Number: 0048 608 33 53 26 |
| Website:www.sarcoma.pl |
| Address: ul. Malborska 14/5, 03-286 Warszawa |
Female Genital Organs
| 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 Number: 0048 601 729 249 |
| Website:http://www.stowarzyszenie-magnolia.org/ |
| Address: Żychlin, ul. Parkowa 2, 62-571 Stare Miasto |
Male Genital Organs
| Organisation Name: Magnolia - Stowarzyszenie kobiet z problemami onkologiczno |
| Organisation Name in English: Organisation of women with Gynaecological cancer problems |
| Type of Rare Cancer: Testicular |
| Email: biuro@stowarzyszenie-magnolia.org |
| Phone Number: 0048 601 729 249 |
| Website:http://www.stowarzyszenie-magnolia.org/ |
| Address: Żychlin, ul. Parkowa 2, 62-571 Stare Miasto |
Haematological Tumours
| 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 Number: 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 (RIETY) |
| Organisation Name in English: National Association for CML Patients Aid (SPBS) |
| Type of Rare Cancer: Chronic Myeloid Leukaemia |
| Email: biuro@spbs.com.pl |
| Phone Number: 0048 504 153 136 |
| Website:http://www.spbs.com.pl/ |
| Address: Bychowska 56, 04-536 WARSZAW |
Portugal
Haematological Tumours
| 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 |
| 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
Haematological Tumours
| Organisation Name: Asociatia Romana Impotriva Leucemiei |
| Organisation Name in English: Romanian Leukaemia Association |
| Type of Rare Cancer: Hodgkin and Leukaemia |
| Email: anka.mateescu@gmail.com |
| Phone Number: 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: |
| Type of Rare Cancer: Multiple Myeloma |
| Email: viorica@myeloma.ro |
| Phone Number: 0040 216506625 |
| Website:http://www.myeloma.ro/ |
| Address: Blvd Averescu No.17 Sector 1 BUCURESTI |
All Rare Cancers
| Organisation Name: Asociaţia Română de Cancere Rare – ARCrare |
| Organisation Name in English: Romanian Association of Rare Cancers |
| Type of Rare Cancer: Rare Cancers |
| Email:dorica.dan@eurordis.org |
| Phone Number: n.a. |
| Website:http://www.arcrareromania.ro |
| Address: Strada 22 Decembrie 1989 Zalău, Romania |
Sarcomas / GIST
| Organisation Name: Romanian GIST Network - Extended to Sarcoma patients |
| Organisation Name in English: |
| Type of Rare Cancer: GIST and Gynecologic Sarcoma |
| Email: si_mi_ene@yahoo.com |
| Phone Number: n.a. |
| Website: Not available yet |
| Address: n.a. |
Spain
Brain Tumours
| 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
|
Endocrine Tumours
| Organisation Name: AECAT - Asociación Española de Cancer de Tiroides |
| Organisation Name in English: |
| Type of Rare Cancer: Thyroid Tumours |
| Email: info@aecat.net |
| Phone Number: 34 901220110 |
| Website:http://www.aecat.net/ |
| Address: Calle Santa Hortensia, 15, 28002 MADRID |
Female Genital Organs
| 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 Number: 0034 91 563 18 01 |
| Website:www.asociacionasaco.es |
| Address: C/ San Nicolás, 15 (acceso C/ Noblejas, 1) 28013 Madrid, Spain |
Haematological Tumours
| Organisation Name: ACHE - Asociación Española Contra la Histiocitosis |
| Organisation Name in English: |
| Type of Rare Cancer: Langerhans cell histiocytosis |
| Email:info@histiocitosis.org |
| Phone Number: 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 Number: 34 916 097 289 |
| Website:http://www.aedm.org/ |
| Address: Calle Los Metales (Pol. Industrial "La Fraila") 18, 28970 MADRID |
All Rare Cancers
| 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 Number: n.a. |
| Website:http://www.apture.org/ |
| Address: n.a. |
Sweden
Brain Tumours
| Organisation Name: Svenska hjarntumorforeningen |
| Organisation Name in English: Swedish Brain tumour association |
| Type of Rare Cancer: Brain tumours |
| Email: alex.johansson@hjarntumorforeningen.se |
| Phone Number: 0046 (0)736-378391 |
| Website:http://www.hjarntumorforeningen.se |
| Address: Brädgatan 49854 60 Sundsvall |
Switzerland
Sarcomas / GIST
| Organisation Name: GIST - Gruppe Schweiz - Groupe GIST Suisse |
| Organisation Name in English: |
| Type of Rare Cancer: GIST |
| Email: helga.meier@bluewin.ch |
| Phone Number: 41 (0)41 710 80 58 |
| Website: n.a. |
| Address: Sterenweg 7, 6300 ZUG |
UK
Brain Tumours
| Organisation Name: Astro Brain Tumour Fund |
| Organisation Name in English: |
| Type of Rare Cancer: Low grade Glioma |
| Email: info@astrofund.org.uk |
| Phone Number: 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: |
| Type of Rare Cancer: Brain Tumours |
| Email: sue@braintumourresearch.org |
| Phone Number: 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: |
| Type of Rare Cancer: Brain Tumours |
| Email: hq@brainstrust.org.uk |
| Phone Number: 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: Brainwaves NI |
| Organisation Name in English: |
| Type of Rare Cancer: Brain Tumours |
| Email:info@brainwaves-ni.org |
| Phone Number: 0044 (0)28 9335 3995 |
| Website: http://www.brainwaves-ni.org/ |
| Address: 68 Cable Road, Whitehead, Co.Antrim, BT38 9PZ |
| Organisation Name: The Brain Tumour Charity |
| Organisation Name in English: |
| Type of Rare Cancer: Brain cancer |
| Email: comms@thebraintumourcharity.org |
| Phone Number: 0044 (0)1252 749990 / Helpline: 0808 800 0004 |
| Website: http://www.thebraintumourcharity.org/ |
| Address: Hartshead House 61-65 Victoria Road Farnborough Hampshire, GU14 7PA |
Sarcomas / GIST
| Organisation Name: “PAWS-GIST” (Paediatric Adolescent Wildtype Syndromic-GIST) |
| Organisation Name in English: |
| Type of Rare Cancer: Paediatric Adolescent Wildtype Syndromic-GIST |
| Email: info@paws-gist.org.uk |
| Phone Number: 0044 (0)7714346241/(0)7743400764 |
| Website: http://www.gistsupportuk.com/paediatric_paws.htm |
|
Address: n.a.
|
| Organisation Name: GIST Support UK |
| Organisation Name in English: |
| Type of Rare Cancer: Gastrointestinal stromal tumor |
| Email: admin@gistsupportuk.com |
| Phone Number: 0044 (0)7714346241/(0)7743400764 |
| Website: www.gistsupportuk.com |
|
Address: n.a.
|
| Organisation Name: Sarcoma UK |
| Organisation Name in English: |
| Type of Rare Cancer: Sarcoma |
| Email: info@sarcoma.org.uk |
| Phone Number: 0044 (0)20 7250 8271 |
| Website: www.Sarcoma.org.uk |
| Address: 49-51 East Road, London, N1 6AH |
Digestive organs
|
Organisation Name: Pseudomyxoma Survivor |
| Organisation Name in English: |
| Type of Rare Cancer: Pseudomyxoma Peritonei (mucinous adenocarcinoma) |
| Email:angela.brook@pseudomyxomasurvivor.co.uk |
| Phone Number: 0044 (0)7530 206 357 |
| Website:http://www.pseudomyxomasurvivor.co.uk/ |
|
Address: 5, Lime Close, Broughton, KETTERING NN14 1NN
|
|
Organisation Name: AMMF – The Cholangiocarcinoma Charity |
| Organisation Name in English: |
| Type of Rare Cancer: Bile duct cancer |
| Email:info@ammf.org.uk |
| Phone Number: 0044 (0)1371 811811 |
| Website:www.ammf.org.uk |
|
Address: Ambrose Cottage, Oxen End, Little Bardfield, Essex CM7 4PR
|
|
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
|
| 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 |
Endocrine Tumours
| Organisation Name: Butterfly Thyroid Cancer Trust (BTCT) |
| Organisation Name in English: |
| Type of Rare Cancer: Thyroid tumours |
| Email: enquiries@butterfly.org.uk |
| Phone Number: 0044 (0)1207 545469 |
| Website:www.butterfly.org.uk |
| Address: PO Box 205, Rowlands Gill, Tyne & Wear, NE39 2WX |
Female Genital Organs
| Organisation Name: Jo’s Cervical Cancer Trust |
| Organisation Name in English: |
| Type of Rare Cancer: Cervical cancer |
| Email:Claire@jostrust.org.uk |
| Phone Number: 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: |
| Type of Rare Cancer: Ovarian cancer |
| Email:info@ovarian.org.uk |
| Phone Number: 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: |
| Type of Rare Cancer: Ovarian cancer |
| Email: info@targetovarian.org.uk |
| Phone Number: 0044 (0)20 7923 5470 |
| Website:www.targetovariancancer.org.uk |
| Address: Target Ovarian Cancer, 2 Angel Gate, London, EC1V 2PT |
|
Organisation Name: Womb Cancer Info (WCI) |
| Organisation Name in English: |
| Type of Rare Cancer: Womb (uterus) cancer |
| Email: ask_wci@outlook.com |
| Phone Number: n.a. |
| Website: n.a. |
|
Address: n.a.
|
| Organisation Name: DEBBIE FUND |
| Organisation Name in English: |
| Type of Rare Cancer: Cervical |
| Email:info@debbiefund.org |
| Phone Number: 0044 (0)20 7679 6325 |
| Website:www.debbiefund.org/ |
| Address: UCL Cancer Institute. Paul O’Gorman Building 72 Huntley Street, London WC1E 6BT |
Haematological Tumours
| Organisation Name: The CML Support Group |
| Organisation Name in English: |
| Type of Rare Cancer: Chronic Myeloid Leukaemia |
| Email: cmlsupportgroup@gmail.com |
| Phone Number: n.a. |
| Website: http://www.cmlsupport.org.uk/ |
| Address: 2 Belgrave Rod, London E7 8E, UK |
| Organisation Name: Leukaemia CARE |
| Organisation Name in English: |
| Type of Rare Cancer: Leukaemia, MDS |
| Email: care@leukaemiacare.org.uk |
| Phone Number: 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: |
| Type of Rare Cancer: Lymphomas |
| Email: J.Pearce@lymphomas.org.uk |
| Phone Number: 0044 (0)1296 619400 |
| Website: http://www.lymphomas.org.uk/ |
|
Address: Lymphoma Association, PO Box 386 Aylesbury, HP20 2GA
|
| Organisation Name: MDS UK Patient Support Group |
| Organisation Name in English: |
| Type of Rare Cancer: MDS |
| Email: mds-uk@mds-foundation.org |
| Phone Number: 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: |
| Type of Rare Cancer: Multiple Myeloma |
| Email :myelomauk@myeloma.org.uk |
| Phone Number: 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: |
| Type of Rare Cancer: Histiocytosis |
| Email: info@hrtrust.org |
| Phone Number: 0044 (0)7850 740241 |
| Website: n.a. |
| Address: Litton House, Saville Road, Peterborough, PE3 7PR |
| Organisation Name: UK Mastocytosis Support Group |
| Organisation Name in English: |
| Type of Rare Cancer: Mastocytosis |
| Email:winegums@blueyonder.co.uk |
| Phone Number: n.a. |
| Website: http://www.ukmasto.org/index.php#sthash.lyaKsrc9.dpbs |
| Address: Selm Park, LIVINGSTON EH54 5NU |
| Organisation Name: WMUK - Waldenstrom's Macroglobulinemia UK |
| Organisation Name in English: |
| Type of Rare Cancer: Waldenström macroglobulinemia |
| Email:info@wmuk.org.uk |
| Phone Number: 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
| Organisation Name: Mouth Cancer Foundation |
| Organisation Name in English: |
| Type of Rare Cancer: Mouth Cancer, Head and Neck Cancers |
| Email:info@mouthcancerfoundation.org |
| Phone Number: 0044 (0)1924 950 950 |
| Website:http://www.mouthcancerfoundation.org/ |
| Address: The Mouth Cancer Foundation Top Floor, 1 Victoria Parade, By 331 Sandycombe Road, Kew, Richmond, Surrey, TW9 3NB |
Male Genital Organs
| Organisation Name: It's in the Bag |
| Organisation Name in English: |
| Type of Rare Cancer: Testicular cancer |
| Email:hello@itsinthebag.org.uk |
| Phone Number: n.a. |
| Website: http://itsinthebag.org.uk/ |
| Address: n.a. |
Neuroendocrine Tumours
| Organisation Name: NET Patient Foundation |
| Organisation Name in English: |
| Type of Rare Cancer: Neuroendocrine Tumours |
| Email:catherine@netpatientfoundation.org |
| Phone Number: Office: 0044 (0)01564 785577 / Helpline: 0800 434 6476 |
| Website:http://www.netpatientfoundation.org/ |
| Address: Boxtrees Farm, The Farm House,Stratford Road, Hockley Heath B94 6EA |
|
Organisation Name: Pancreatic Cancer UK |
| Organisation Name in English: |
| Type of Rare Cancer: Pancreatic Neurendocrine Tumours |
| Email: anna@pancreaticcancer.org.uk |
| Phone Number: 0044 (0)20 3535 7090 / 0044 (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
| Organisation Name: Melanoma focus |
| Organisation Name in English: |
| Type of Rare Cancer: Non Skin Melanoma |
| Email: rodwell@melanomafocus.com |
| Phone Number: 0044 (0)161 918 7444 |
| Website:http://melanomafocus.com/ |
| Address: Melanoma Focus, Queen Anne House, Gonville Place, Cambridge CB1 1ND |
All Rare Cancers
| Organisation Name: Cancer of Unknown Primary (CUP) Foundation |
| Organisation Name in English: |
| Type of Rare Cancer: Cancer of Unknown Primary |
| Email:supporters@cupfoundjo.org. |
| Phone Number: n.a. |
| Website: http://www.cupfoundjo.org/ |
| Address: The Follies, Brightwalton, Newbury, England, RG20 7BZ |
| Organisation Name: Rarer Cancers Foundation |
| Organisation Name in English: |
| Type of Rare Cancer: Rare Cancers |
| Email: contact@rarercancers.org.uk |
| Phone Number: 0044 (0)208 692 2910 |
| Website:http://www.rarercancers.org.uk/ |
| Address: Unit 7B, Evelyn Court, Grinstead Road, London SE8 5AD |
Bone Cancers
| Organisation Name: Guy Francis Bone Cancer Research Fund |
| Organisation Name in English: |
| Type of Rare Cancer: Bone Cancer |
| Email:mike.francis@gfbonecancer.org.uk |
| Phone Number: 0044 (0)1904 799151 |
| Website:http://www.gfbonecancer.org.uk/ |
| Address: Acomb House 23, Front Street, Acomb, York, YO24 3BW |
| Organisation Name: Bone Cancer Research Trust |
| Organisation Name in English: |
| Type of Rare Cancer: Osteosarcoma and Ewing’s sarcoma |
| Email:info@bcrt.org.uk |
| Phone Number: 0044 (0)113 258 5934 |
| Website:http://www.bcrt.org.uk |
| Address: 10 Feast Field, Horsforth, Leeds LS18 4TJ |
