Tamara Hussong Milagre is the founder and president of the patient association EVITA – Cancro Hereditário (=AVOID Hereditary Cancer), supporting families affected by Hereditary Cancer Syndromes since 2011. Since 2017, she is also a European Patient Advocate Group representative at European Reference Network GENTURIS (Genetic Tumor Risk Syndromes), compromised in the thematic group about Hereditary Breast and Ovarian Cancer HBOC and in the taskforce for Education, Training and Development.
In 2008, Tamara was working as a nurse in Lisbon when she learned that she was genetically predisposed to breast and ovarian cancer due to a BRCA1 mutation. Since then she is studying any related subject and is actively involved in decision making processes in Portugal and Europe. She incentivized investigation of the Portuguese founder mutation BRCA2-P in partnership with the Portuguese Association of Cancer Investigation ASPIC by organizing in 2015 the International BRCA Network Congress in Lisbon, counting in the most prestigious experts worldwide. Besides countless further education, she performed in 2017 the Master Class of the European School of Oncology ESO for leading patient advocates and turned later into a Patient Expert by undergoing the EUPATI course which taught her the importance and impact of patient involvement in the research and development of medicines. She graduated in 2019 from EURORDIS Leadership School on Healthcare & Research, a capacity building programme for European Patient Advocacy Groups (ePAGs) on leadership, network management healthcare and research.
Tamara collaborates on a regular bases with the Portuguese medicines agency Infarmed and she is involved in the European Multi-Stakeholder Sounding Board of EFPIA Oncology Platform | “Time to Patient Access” Project. She integrates the working group dedicated to Hereditary Cancer Syndromes of the Portuguese Society of Oncology. She is member of several advisory boards, p.eg. at the German Center of Cancer Investigation dkfz regarding the DataBox Project, the advisory group of the Cancer Mission Portugal by AICIB, the advisory board of the Insitute of EVIDENCE BASED HELATH ISBE and integrates international working groups regarding metastatic breast cancer and hereditary cancer. She is a frequent invited speaker on national and international health related conferences and is in constant contact with thousands of gene carriers all over the world by being a member and counselor of several international closed groups on social media (one of which > 10.000 members).
