information RARECANCERS

 

 

HEAD AND NECK

HEAD AND NECK IN GENERAL

Macmillan Cancer Support:    Macmillan Cancer Support Information  

NASAL CAVITY AND SINUSES

Macmillan Cancer Support:    Macmillan Cancer Support Information  

NASOPHARYNX

Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen information  

MAJOR SALIVARY GLANDS AND SALIVARY-GLAND TYPE TUMOURS

Patient Organisation:    Mouth Cancer UK - English  
Patient Organisation:    ACCOI - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen information  

HYPOPHARYNX AND LARYNX

Patient Organisation:    AgaliaZO - Greek  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

OROPHARYNX

Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen information  

ORAL CAVITY AND LIP

Patient Organisation:    Mouth Cancer UK - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

DIGESTIVE ORGANS

OESOPHAGUS

Macmillan Cancer Support:    Macmillan Cancer Support Information  
ESMO:    ESMO Patient guide  
START Oncology:    START, laymen information  

SMALL INTESTINE (Small Bowel)

Macmillan Cancer Support:    Macmillan Cancer Support Information  

COLON (Pseudomyxoma peritonei)

Macmillan Cancer Support:    Macmillan Cancer Support Information  

ANAL CANAL

Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen information  

PANCREAS

Patient Organisation:    Pancreatic Cancer UK - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information  
ESMO:    ESMO Patient guide  
START Oncology:    START, laymen information  
RARECARENet Material:    Expert on pancreatic cancer  

LIVER AND INTRAEPATIC BILE TRACT (IBT)

Macmillan Cancer Support:    Macmillan Cancer Support Information - LIVER  
Macmillan Cancer Support:    Macmillan Cancer Support Information - BILE DUCT  
ESMO:    ESMO Patient guide  
START Oncology:    START, Cholangiocarcinoma, laymen information  
START Oncology:    START, Liver Cancer, laymen information  

GALLBLADDER AND EXTRAHEPATIC BILIARY TRACT (EBT)

Macmillan Cancer Support:    Macmillan Cancer Support Information  

INTRATHORACIC ORGANS

TRACHEA

Macmillan Cancer Support:    Macmillan Cancer Support Information  

LUNG (Rare sub-types)

European Lung Foundation:    European Lung Foundation Factsheets  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

THYMUS

Macmillan Cancer Support:    Macmillan Cancer Support Information  

MESOTHELIOMA

MESOTHELIOMA

Patient Organisation:    Amarape - French  
Patient Organisation:    Mesothelioma Guide - English  
Support Community:    Mesothelioma Group - English  
Information Website:    Mesothelioma Explained - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

BREAST

BREAST

Macmillan Cancer Support:    Macmillan Cancer Support Information- MALE BREAST CANCER  
Macmillan Cancer Support:    Macmillan Cancer Support Information - TUBULAR BREAST CANCER  
Macmillan Cancer Support:    Macmillan Cancer Support Information - PAGET'S DISEASE  

FEMALE GENITAL ORGANS

CORPUS UTERI

Patient Organisation:    Womb Cancer Support UK - English  

CERVIX UTERI

Patient Organisation:    Jo's Trust - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information  
ESMO:    ESMO Patient guide  

OVARY AND FALLOPIAN TUBE

Macmillan Cancer Support:    Macmillan Cancer Support Information  

VULVA AND VAGINA

Patient Organisation:    VulvaKarzinom-SHG eV - German  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

MALE GENITAL ORGANS

PARATESTICULAR AND TESTICULAR CANCERS

Patient Organisation:    It's in the bag - Patient Organisation  
Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen information  

PENIS

Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen information  

PROSTATE (Rare sub-types)

RARECARENet Material:    Expert on prostate cancer  

URINARY TRACT

PELVIS, URETER AND URETHRA

Macmillan Cancer Support:    Macmiilan Cancer Support Information  

BLADDER

Patient Organisation:    Fight Bladder Cancer - English  
START Oncology:    START, laymen information  

NON SKIN MELANOMA

NON SKIN MELANOMA

Macmillan Cancer Support:    Macmillan Cancer Support Information  

CENTRAL NERVOUS SYSTEM (CNS)

CENTRAL NERVOUS SYSTEM (CNS)

Patient Organisation:    Cancé-tu - French  
Patient Organisation:    Tumori Cerebrali - Italian  
Patient Organisation:    International Brain Tumour Alliance (IBTA) - English  
Patient Organisation:    Astro Fund - English  
Patient Organisation:    Stop Hersentumorn - Dutch  
Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen information  

ENDOCRINE ORGANS (Thyroid etc)

ENDOCRINE ORGANS (Thyroid etc)

Patient Organisation:    Aecat - Spanish  
Patient Organisation:    Mouth Cancer Foundation - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen information  

SARCOMAS

SARCOMAS

Patient Organisation:    Sarcoma - Stowarzyszenie Pomocy Chorym na Miesaki - Polish  
Patient Organisation:    Sarcoma UK - English  
Patient Organisation:    BCRT - PRIMARY BONE CANCER - English  
Patient Organisation:    Info Sarcomes - French  
Patient Organisation:    Sarcomer - Norwegian  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

GIST

Patient Organisation:    Gistoline - Italian  
Patient Organisation:    GIST Bg - Bulgarian  
Patient Organisation:    AgaliaZO - Greek  
Patient Organisation:    GIST Support UK - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information  
START Oncology:    START, laymen version  

EMBRYONAL NEOPLASMS

NEUROBLASTOMA AND GAGLIONEUROBLASTOMA

Patient Organisation:    Neuroblastoma - Italian  
START Oncology:    START, laymen information  

NEPHROBLASTOMA

Macmillan Cancer Support:    Macmillan Cancer Support Information  

RETINOBLASTOMA

Patient Organisation:    RetinoStop - French  
Patient Organisation:    Chect - English  

NEUROENDOCRINE TUMOURS

NEUROENDOCRINE TUMOURS

Patient Organisation:    Vivere La Speranza - Italian  
Patient Organisation:    Carcinor - Norwegian  
Patient Organisation:    Vzw NET & MEN Kanker - Dutch  
Patient Organisation:    APTED - French  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

HAEMATOLOGICAL TUMOURS

RARE LYMPHOID DISEASES

Lymphomas

Patient Organisation:    The lymfkierkankervereniging Flanders - Dutch  
Patient Organisation:    France Lymphome Espoir - French  
Patient Organisation:    AgaliaZO - Greek  
Patient Organisation:    Lymphoma Association - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information - MANTLE CELL LYMPHOMA  
Macmillan Cancer Support:    Macmillan Cancer Support Information - BURKITT LYMPHOMA  
Macmillan Cancer Support:    Macmillan Cancer Support Information - FOLLICULAR LYMPHOMA  
START Oncology:    START, laymen information  

T cutaneous lymphoma (Mycosis fungoides, Sezary syndrome)

Macmillan Cancer Support:    Macmillan Cancer Support Information  

Hairy cell leukaemia

Patient Organisation:    Haarzel Leukaemie - German  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

CLL (Chronic Lymphatic Leukemia)

Macmillan Cancer Support:    Macmillan Cancer Support Information  

Plasmacytoma/Multiple Myeloma (and Heavy chain diseases)

Patient Organisation:    Myelome - French  
Patient Organisation:    Myeloma - Czech  
Patient Organisation:    Myeloma UK - English  
Patient Organisation:    APCL, Associação Portuguesa Contra a Leucemia - Portuguese  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

Waldenstrom macroglobulinemia

Patient Organisation:    AgaliaZO - Greek  
Patient Organisation:    EMNetwork - English  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

MYELOPROLIFERATIVE NEOPLASMS

Chronic myeloid leukemia (CML)

Patient Organisation:    Diagnoza CML - Czech  
Patient Organisation:    CML Advocates Network, ELN Recommendations Summary - English  
Patient Organisation:    Leukaemie-Online - German  
Patient Organisation:    APCL, Associação Portuguesa Contra a Leucemia - Portuguese  
Macmillan Cancer Support:    Macmillan Cancer Support Information  
ESMO:    ESMO Patient Guide  

Other myeloproliferative neoplasms (PV, ET, myelofibrosis)

Patient Organisation:    ALTE - French  
Patient Organisation:    MPN Netzwerk - German  
Macmillan Cancer Support:    Macmillan Cancer Support Information- ESSENTIAL THROMBOCYTHAEMIA  
Macmillan Cancer Support:    Macmillan Cancer Support Information - MYELOFIBROSIS  
Macmillan Cancer Support:    Macmillan Cancer Support Information - POLYCYTHAEMIA VERA  

Mast cell tumour (Mastocytosis)

Patient Organisation:    AFIRMM - French  

MYELODYSPLASTIC SYNDROME AND MYELODYSPLASTIC/MYELOPROLIFERATIVE DISEASES

MYELODYSPLASTIC SYNDROME AND MYELODYSPLASTIC/MYELOPROLIFERATIVE DISEASES

Patient Organisation:    Diagnoza MDS - Czech  
Patient Organisation:    MDS Patienten Interessen Gemeinschaft - German  
Macmillan Cancer Support:    Macmillan Cancer Support Information  

HISTIOCYTIC AND DENDRITIC CELL NEOPLASMS

HISTIOCYTIC AND DENDRITIC CELL NEOPLASMS

Macmillan Cancer Support:    Macmillan Cancer Support Information