Patient Associations

Patient associations for hereditary cancer syndromes

General

• Czech Republic: http://arcus-oc.org/
• France: http://geneticancer.org
• Italy: https://mutagens.it/
• Portugal: http://www.evitacancro.org
• Spain: http://actitudfrentealcancer.org

 

Schwannomatosis and neurofibromatosis

• Europe: https://www.nf-patients.eu/. List of member organizations: https://www.nf-patients.eu/about/
• Austria: http://www.nfkinder.at/
• Belgium: NF kontakt VZW
• Denmark: https://nfdanmark.dk/ (member of NFPU)
• France: https://www.ligue-neurofibromatoses.fr/ 
• Italy: http://www.neurofibromatosi.it/, https://www.linfaneurofibromatosi.com/ and https://www.nf2project.org/ 
• Spain: https://neurofibromatosis.es/ (member of NFPU)
• United Kingdom: https://www.childhoodtumourtrust.org.uk/ (member of NFPU)

 

Lynch and polyposis

• Belgium: https://belgianfapa.be/nl/
• Finland: https://www.colores.fi/  (Colores - Finnish Colorectal Cancer Association)
• France: https://www.hnpcc-lynch.com/ and https://www.polyposes-familiales.fr/ 
• Germany: https://www.semi-colon.de/ and http://familienhilfe-polyposis.de/
• Italy: https://www.aptead.org/, https://mutagens.it/ and https://www.desmoidfoundation.org/en/ (regarding desmoid tumours in patients with FAP)
• Netherlands: http://www.lynch-polyposis.nl/
• Spain: https://afalynch.org/ (AFALYNCH - Spanish Association of families with Lynch syndrome)

 

Hereditary Breast and Ovarian Cancer

• Europe: https://www.europadonna.org
• Germany: https://www.brca-netzwerk.de
• Italy: http://www.abrcadabra.it
• Northern Ireland: http://brcani.co.uk
• UK: http://brcaumbrella.ning.com

 

Other rare genturis

PTEN Hamartoma Tumour Syndrome (PHTS)

• Belgium and The Netherlands: https://www.ptenbelgienederland.nl
• Germany: http://shg-cobald.de/
• Italy: http://www.ptenitalia.org/
• UK & Ireland: http://ptenuki.org/
• International: https://ptenfoundation.org/

Li-Fraumeni Syndrome (LFS)

• The American LFS Association has several EU chapters:
  France: https://www.lfsassociation.org/france/
  Germany: https://www.lfsassociation.org/germany/
  Netherlands: https://www.lfsassociation.org/netherlands/

Birt-Hogg-Dubé Syndrome

• UK: https://www.bhdsyndrome.org/

Diffuse Gastric and Lobular Breast Cancer Syndrome (DGLBC)

• Italy www.viveresenzastomaco.org
• Portugal http://www.europacolon.pt/