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 |
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 |
Austria
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. |
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 |
Target Ovarian Cancer, 2 Angel Gate, London, EC1V 2PT