Advocacy worldwide for women with bleeding disorders

Evelyn Grimberg

doi:10.2478/jhp-2022-0019

Abstract

Abstract

Raising awareness that bleeding disorders affect women – not just men – is a key part of advocacy initiatives around the world. The European Haemophilia Consortium (EHC) and national patient organisations have run successful campaigns, with a wealth of information for women and girls with bleeding disorders and non-specialist healthcare professionals, including bleeding assessment tools, patient stories, blogs and videos. Some hold conference sessions and webinars devoted to bleeding disorders in women. By drawing on ideas and resources already available, patient organisations and other groups for women with bleeding disorders can fast-forward their advocacy plans, improve awareness and accelerate change.

Article

View Full Article

References

1. European Haemophilia Consortium. Women and Bleeding Disorders: Untold Stories. 2019. Available from https://www.ehc.eu/bleeding-disorders/women-with-bleeding-disorders/ (accessed 1 September 2022).
2. Keys I. Bloody Beautiful: Women in the Lead. 2018. Shire Netherlands BV. http://www.ingeborgkuys.nl/bloody-beautiful/ (accessed 1 September 2022).
3. European Haemophilia Consortium. EHC introduces new educational app on rare bleeding disorders & novel therapies. February 2021. Available from https://www.ehc.eu/ehc-introduces-new-education-app-on-novel-therapies/ (accessed 1 September 2022).
4. European Haemophilia Consortium. EHC Women's Committee marks International Women's Day. February 2022. Available from https://www.ehc.eu/ehc-womens-committee-marks-international-womens-day/ (accessed 1 September 2022).
5. Association française des hémophiles. Rétrospective de la Commission Femmes. 17 February 2021. Available from https://afh.asso.fr/2021/02/17/retrospective-de-la-commission-femmes/ (accessed 20 September 2022).
6. Association française des hémophiles. Commission Femmes. Quiz – Diagnostic. Available from https://afh.asso.fr/wp-content/uploads/2017/09/FR-fich-diagnostic_WEB.pdf (accessed 20 September 2022).
7. van Galen K, Lavin M, Skouw-Rasmussen N, et al.; European Haemophilia Consortium (EHC) and European Association for Haemophlia and Allied Disorders (EAHAD). European principles of care for women and girls with inherited bleeding disorders. Haemophilia 2021; 27: 837–847. doi: https://doi.org/10.1111/hae.14379.
8. The Haemophilia Society. Talking Red – supporting women with bleeding disorders. Available from https://haemophilia.org.uk/support/talking-red/ (accessed 1 September 2022).
9. Let's Talk Period. Available from https://letstalkperiod.ca (accessed 1 September 2022).
10. Hemophilia Federation of America. Blood Sisterhood: a new app for women with bleeding disorders. Available from https://www.sisterhoodapp.com (accessed 5 September 2022).
11. Know Your Flow. 2022. Available from: https://www.knowyourflow.ie (accessed 5 September 2022).
12. Förbundent Blödarsjuka I Sverige. Girls with bleeding disorders. Available from https://blodarsjuk.nu/en/home/ (accessed 5 September 2022).
13. Förbundent Blödarsjuka I Sverige. Var är Mary? Tjejer och blödarsjuka: symtom, utredning och behandling. 2016. Available from https://www.svenskalag.se/fbis/dokument/dffe2502-5f15-48dd-bd5b-d1d5d2751067/Var_ar_Mary-FBIS-broschyr_XS.pdf (accessed 15 September 2022).
14. Association française des hémophiles. Commission Femmes. Available from https://afh.asso.fr/avec-lafh/notre-organisation-en-chiffres/les-commissions/femmes/ (accessed 20 September 2022).
15. Association française des hémophiles. Ensemble, pour un #Diagnosticpourtoutes. 8 March 2022. Available from https://www.youtube.com/watch?v=GUfytYX2jrA (accessed 5 September 2022).

Advocacy worldwide for women with bleeding disorders

Abstract

Article

References

PDF Download

Authors

Evelyn Grimberg