RESOURCES

Explanatory documents

American Cancer Society & International Agency for Research on Cancer. (2025). Policies & legislation. In The cancer atlas (Chap. 45). https://canceratlas.cancer.org/taking-action/policies-and-legislation/#block-4

Belgian Health Care Knowledge Centre. (2022). The right to be forgotten in breast cancer: New propositions. https://kce.fgov.be/en/publications/all-reports/the-right-to-be-forgotten-in-breast-cancer-new-propositions

Ciência Viva, European Academy of Cancer Sciences, & German Cancer Research Center. (2022). The Heidelberg manifesto on European cancer research. https://www.dkfz.de/de/forschung/kooperationen/download/Heidelberg-Manifesto-15oct2022.pdf

EDACS. (2026a, July). EDACS flyer. https://drive.google.com/file/d/1hjUVXTDfS8276-VemSvvqTlywNqEEBdw/view?usp=sharing

EDACS. (2026b, July). EDACS policy brief. https://drive.google.com/file/d/1r6gWqlawSELNZMwZNeyjN22HRzXdl2Ht/view?usp=sharing

European Cancer Patient Coalition. (2020a). There is life after cancer [Report]. https://ecpc.org/report-there-is-life-after-cancer/

European Commission. (2022a). Access to financial products for persons with a history of cancer in EU member states. https://health.ec.europa.eu/publications/access-financial-products-persons-history-cancer-eu-member-states_en

European Commission. (2022b, May 30). Speech by Commissioner Stella Kyriakides at the webinar on the “Right to be forgotten” [Speech]. https://cyprus.representation.ec.europa.eu/news/speech-commissioner-stella-kyriakides-webinar-right-be-forgotten-2022-05-30_en

European Society for Medical Oncology. (2023). The right to be forgotten: ESMO calls on EU countries to ensure equal financial rights for cancer survivors [Press release]. https://www.esmo.org/newsroom/press-releases/the-right-to-be-forgotten-esmo-calls-on-eu-countries-to-ensure-equal-financial-rights-for-cancer-survivors

Irish Cancer Society. (2022). Access to financial products report 2022. https://www.cancer.ie/sites/default/files/2022-02/Access%20to%20Financial%20products%20report%202022.pdf

Odnoletkova, I., Silversmit, G., de Meester, C., Van Ginckel, A., Hulstaert, F., & Vinck, I. (2026). Droit à l’oubli dans le cancer de la thyroïde: Recommandations evidence-based pour la fixation des délais d’attente (KCE Reports 425BS). Centre Fédéral d’Expertise des Soins de Santé. https://doi.org/10.57598/R425BS

Political declaration and list of actions against cancer recommended by a panel of European stakeholders. (2022). European Cancer Meeting. https://rencontresinca.fr/wp-content/uploads/2022/02/[email protected]

Youth Cancer Europe. (2018a). The right to be forgotten: A contributor’s perspective. https://www.youthcancereurope.org/blog-the-right-to-be-forgotten-a-contributors-perspective/

Youth Cancer Europe. (2018c). White paper on the needs of young people. https://www.youthcancereurope.org/yce-hosts-eu-parliament-event-to-end-financial-discrimination-against-cancer-survivors/

News and web articles

Cancer insurance questions ‘must end for survivors’. (2018). BBC News. https://www.bbc.com/news/uk-45968505

Cancer survivors battling for fairer travel premiums. (2018). Insurance Times. https://www.insurancetimes.co.uk/news/cancer-survivors-battling-for-fairer-travel-premiums/1428616.article

Health brief: A double punishment for cancer survivors. (2022). Euractiv. https://www.euractiv.com/section/health-consumers/news/health-brief-a-double-punishment-for-cancer-survivors/

Matthews-King, A. (2018, October 22). Former child cancer patients denied mortgages and insurance demand ‘right to be forgotten’. The Independent. https://www.independent.co.uk/news/health/cancer-right-forgotten-health-childhood-mortgage-insurance-loan-youth-europe-a8596146.html

MPs and charities campaign to change insurance rules on cancer declaration. (2018, October 29). Insurance Edge. https://insurance-edge.net/2018/10/29/mps-and-charities-campaign-to-change-insurance-rules-on-cancer-declaration/

Oncological right to be forgotten remains an unresolved issue in the EU. (2023). Euractiv. https://www.euractiv.com/section/health-consumers/news/oncological-right-to-be-forgotten-remains-an-unresolved-issue-in-the-eu/

Raising awareness about health care rights in the EU. (2019). The Portugal News. https://www.theportugalnews.com/news/raising-awareness-about-health-care-rights-in-the-eu/51870

Right to be forgotten. (2018). YouthTime Magazine. http://youthtimemag.com/discover-eu-free-train-travel-for-teens-applications-soon-open/

ULISES. (n.d.). From death to discrimination sentence: When surviving cancer equals being denied basic rights. https://ulises-project.eu/news/from-death-to-discrimination-sentence-when-surviving-cancer-equals-being-denied-basic-rights/

Event reports

Towards harmonised ‘right to be forgotten’ reference grids for cancer survivors: Key best practices for robust equitable outcomes [Roundtable report]. (2025). LinkedIn. https://www.linkedin.com/posts/fran%C3%A7oise-meunier-b5a44792_roundtable-report-activity-7403797498722410496-IpCU?utm_source=share&utm_medium=member_desktop&rcm=ACoAAC1WEJEBHKRp5ORNpjtZftReV-lCzqRtwqM

Videos

ARD Panorama. (2025). Cured of cancer: Disadvantaged for life? [Video].

Cancer Patients Europe. (2024). Webinar series: Survivorship [Video]. YouTube. https://www.youtube.com/watch?v=4RKZzl5aozk

Cancer survivors should not pay twice | Françoise Meunier | TEDxMonteCarlo [Video]. (n.d.). YouTube. https://www.youtube.com/watch?v=9VOHt1oULJ0

EBMT 52nd annual meeting [Video]. (n.d.). https://drive.google.com/file/d/1HbAClKPsZU7IDDiygfc4-T0iSyjby1YH/view?usp=sharing

European Cancer Organisation. (2023). Cancer survivors matter: Championing the European Cancer Survivorship Day and advancing the right to be forgotten [Video]. Vimeo. https://vimeo.com/showcase/10826778/video/889070271

European Cancer Patient Coalition. (2020b). There is life after cancer [Video]. YouTube. https://www.youtube.com/watch?v=ufVDxJ9PjtM

European Cancer Patient Coalition. (2021a). 14 million reasons to discuss life after cancer: Implementing the right to be forgotten in Europe [Video]. YouTube. https://www.youtube.com/watch?v=aCUwBqmBbHc

European Cancer Patient Coalition. (2021b). 20 million reasons to discuss life after cancer: Establishing a European Cancer Survivorship Day [Video]. YouTube. https://www.youtube.com/watch?v=xwMkebILGjQ&ab_channel=ecpcTV

European Cancer Patient Coalition. (2023). 2nd day 5th session 4 Meunier [Video]. YouTube. https://www.youtube.com/watch?v=gt-cJjyzDEs

SIC Notícias. (2021, September 5). O direito ao esquecimento para os sobreviventes de cancro infantil [Video]. https://sicnoticias.pt/tenho-cancro-e-depois/e-depois/as-historias/2021-09-05-O-direito-ao-esquecimento-para-os-sobreviventes-de-cancro-infantil-ede29467

Youth Cancer Europe. (2018b). The right to be forgotten: Creating ripples across Europe [Video]. YouTube. https://www.youtube.com/watch?v=mhQ7XkVdvz4

Scientific articles and academic reports

Bougas, N., Dabakuyo Yonli, T. S., Assogba, E., Haddy, N., de Vathaire, F., Janah, A., Michel, M., Bourmaud, A., Jeanningros, H., Ursino, M., Debailly, R., & Dumas, A. (2025). Effects of the right to be forgotten for childhood or breast cancer survivors: Results of a quasi-experimental study in France. Journal of Cancer Survivorship. Advance online publication. https://doi.org/10.1007/s11764-025-01830-4

Carrera, P. M., Curigliano, G., Santini, D., Sharp, L., Chan, R. J., Pisu, M., Perrone, F., Karjalainen, S., Numico, G., Cherny, N., Winkler, E., Amador, M. L., Fitch, M., Lawler, M., Meunier, F., Khera, N., Pentheroudakis, G., Trapani, D., & Ripamonti, C. I. (2024). ESMO expert consensus statements on the screening and management of financial toxicity in patients with cancer. ESMO Open, 9(5), Article 102992. https://www.sciencedirect.com/science/article/pii/S2059702924007609 https://doi.org/10.1016/j.esmoop.2024.102992

Demeuse, I., Kavak, D., Nicolas, L., Ntumba Picamal, J., & Wibaut, A. (2025). Garantir le droit à l’oubli des personnes survivantes du cancer: Recours en vue de sa reconnaissance à l’échelle européenne. Equality Law Clinic, Faculté de Droit et de Criminologie, Université libre de Bruxelles. French version; English version.

Dumas, A., Allodji, R., Fresneau, B., Valteau-Couanet, D., El-Fayech, C., Pacquement, H., Laprie, A., Nguyen, T. D., Bondiau, P.-Y., Diallo, I., Guibout, C., Rubino, C., Haddy, N., Oberlin, O., Vassal, G., & de Vathaire, F. (2017). The right to be forgotten: A change in access to insurance and loans after childhood cancer? Journal of Cancer Survivorship, 11(4), 431–437. https://doi.org/10.1007/s11764-017-0600-9

Faccioli, M. (2024). The right to oncological oblivion in Law No. 193/2023: The Italian approach to the legal protection of cancer survivors. BioLaw Journal–Rivista di BioDiritto, (1), 75–93. https://www.biodiritto.org/ocmultibinary/download/4471/52286/1/312681503970ae90899399602a5398f6/file/19+Faccioli+online+First.pdf https://doi.org/10.15168/2284-4503-2989

Hessing, B., Luedersen, J., Scharping, L., Zehbe, A., Gotta, J., Alfes, M., & Wild, E.-M. (2026). Financial and legal burdens and discrimination after surviving a childhood cancer diagnosis in Germany—Results from a survey in the German childhood cancer survivor community. Journal of Adolescent and Young Adult Oncology, 15(1), 23–28. https://doi.org/10.1089/jayao.2025.0026

Lawler, M., & Meunier, F. (2022). Don’t make cancer survivors pay twice—the right for them to be “forgotten” should be law everywhere. BMJ, 378, Article o2197. https://doi.org/10.1136/bmj.o2197 https://www.bmj.com/content/378/bmj.o2197

Lawler, M., De Lorenzo, F., Lagergren, P., Mennini, F. S., Narbutas, S., Scocca, G., & Meunier, F. (2021). Challenges and solutions to embed cancer survivorship research and innovation within the EU Cancer Mission. Molecular Oncology, 15(7), 1750–1758. https://doi.org/10.1002/1878-0261.13022 https://febs.onlinelibrary.wiley.com/doi/10.1002/1878-0261.13022

Lawler, M., Oliver, K., Gijssels, S., Aapro, M., Abolina, A., Albreht, T., Erdem, S., Geissler, J., Jassem, J., Karjalainen, S., La Vecchia, C., Lievens, Y., Meunier, F., Morrissey, M., Naredi, P., Oberst, S., Poortmans, P., Price, R., Sullivan, R., . . . Selby, P. (2021). The European code of cancer practice. Journal of Cancer Policy, 28, Article 100282. https://doi.org/10.1016/j.jcpo.2021.100282 https://www.sciencedirect.com/science/article/pii/S2213538321000138?via%3Dihub

Lawler, M., Scocca, G., & Meunier, F. (2024). Ending financial discrimination for cancer survivors: Embedding the right to be forgotten in legislation across Europe. The Lancet Oncology, 25(9), 1123–1126. https://doi.org/10.1016/S1470-2045(24)00312-7 https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(24)00312-7/abstract https://doi.org/10.1016/S1470-2045(24

Meunier, F. (2024). Protecting cancer survivors from financial discrimination throughout the EU: A cross-European perspective. European Journal of Cancer, 209, Article 114238. https://doi.org/10.1016/j.ejca.2024.114238

Meunier, F., Scocca, G., & Tulkens, F. (2025). Towards promoting a legal framework for ending discrimination against cancer survivors. A human rights-centered approach. Journal of Cancer Policy, 43, Article 100527. https://doi.org/10.1016/j.jcpo.2024.100527

Picot, J. (2017). Droit à l’oubli pour les malades de cancers: Un risque relatif pour les assurances. Assurances et gestion des risques / Insurance and Risk Management, 84(3–4), 153–163. https://www.erudit.org/fr/revues/agr/2017-v84-n3-4-agr03432/1043360ar/

Saul, H., Liu, L., & Meunier, F. (2018). Call for action to end discrimination against cancer survivors. Journal of Cancer Policy, 17, 1–3. https://www.sciencedirect.com/science/article/abs/pii/S2213538318300468

Scocca, G., & Meunier, F. (2020). A right to be forgotten for cancer survivors: A legal development expected to reflect the medical progress in the fight against cancer. Journal of Cancer Policy, 25, Article 100246. https://www.sciencedirect.com/science/article/abs/pii/S2213538320300382?via%3Dihub

Scocca, G., & Meunier, F. (2021). “There is life after cancer”: The medical, psychological, social and financial challenges of cancer survivors at the end of the active treatment. In S. Rauh (Ed.), Survivorship care for cancer patients (pp. 41–54). Springer. https://link.springer.com/chapter/10.1007/978-3-030-78648-9_3

Scocca, G., & Meunier, F. (2022). Towards an EU legislation on the right to be forgotten to access to financial services for cancer survivors. European Journal of Cancer, 162, 133–137. https://linkinghub.elsevier.com/retrieve/pii/S0959804921012557

Soetewey, A., Legrand, C., Denuit, M., & Silversmit, G. (2025). Semi-Markov modeling for disease incidence risk and duration. Biostatistics & Epidemiology, 9(1), Article e2517916. https://www.tandfonline.com/doi/full/10.1080/24709360.2025.2517916?scroll=top&needAccess=true https://doi.org/10.1080/24709360.2025.2517916

Stepanishyna, Y., Meunier, F., & Bron, D. (2024). Survivorship after Hodgkin lymphoma and the right to be forgotten. Current Opinion in Oncology, 36(5), 360–368. https://doi.org/10.1097/CCO.0000000000001072 https://pubmed.ncbi.nlm.nih.gov/39007329/

Tralongo, P., Cappuccio, F., Gori, S., Donato, V., Beretta, G., Elia, A., Romano, F., Iacono, M., Tralongo, A. C., Bordonaro, S., Di Mari, A., Rametta Giuliano, S., Buccafusca, G., Careri, M. C., & Santoro, A. (2023). Clinicians’ and patients’ perceptions and use of the word “cured” in cancer care: An Italian survey. Current Oncology, 30(2), 1332–1353. https://www.mdpi.com/1718-7729/30/2/103 https://doi.org/10.3390/curroncol30020103

Tripi, D., Marinelli, S., Spadazzi, F., Guarnaccia, F. R., Zaami, S., & Frati, P. (2025). The law on oncological oblivion in the Italian and European context: How to best uphold the cancer patients’ rights to privacy and self-determination? Open Medicine, 20(1), Article 20251222. https://doi.org/10.1515/med-2025-1222

EDACS mentions

Honourable mentions in the best EU public affairs campaign 2025. (2025). In BestinBrussels 2025/26. https://www.bestinbrussels.eu/wp-content/uploads/2025/06/BestinBrussels-2025_26.pdf