PATIENT. ADVOCACY.
Meet the ELBCC Patient Advocates
Rian Terveer-Couperus
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Rian was diagnosed with invasive lobular carcinoma in 2011. She is a patient advocate for the Breast Cancer Organisation Netherlands (BVN) and Zorgbelang Fryslân. Her drive is the continuous building and improving the well-being of cancer patients. She is a volunteer (Rayonhead and Inspirator) for the Maarten van der Weijden Foundation. Maarten swam the 11-stedenzwemtocht (200 km) and in doing so collected 11,5 million Euro for cancer charities. Rian is also Chairman For the Dutch Cancer Society (regional commissioner for education, attention and information ‘confluence for hope’). She is co-founder of a walk-in house for cancer patients in her home Province of Friesland, The Netherlands.
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Siobhán Freeney
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Siobhán was Diagnosed with stage 3 ILC Breast Cancer in 2015. Following extensive treatment and surgery she became interested in patient advocacy. She set up Ireland's first Breast Density patient advocacy www.beingdense.com. In June 2019 she collaborated with BREAST_Predict to co-host the first Irish public Seminar on Mammographic Breast Density in the RCSI Dublin. Siobhán was recently accepted into the Susan G Komen, Advocates in Science (AIS) Program. She is also a member of the Irish Cancer Society PPI patient review panel. She has been networking with several Irish and International Breast Cancer organisations and research groups over the last few years. This year she will graduate from the Irish Platform for Patient Organisations Science and Industry - IPPOSI - Patient Education and Training Programme https://www.ipposi.ie/about-us/
When the LobularBreastCancer.org was established in the USA, evidence based ILC research became available to patients, Siobhán began to advocate locally about Invasive Lobular Breast Cancer. She is now involved with a group of ILC researchers, Clinicians and patients and they are establishing Lobular Ireland, an Irish ILC Advocacy group. "I would like to develop an effective ILC advocacy, to help raise awareness of the unique and complex aspects of Invasive Lobular Breast Cancer." |
Claire Louise Turner
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Claire was diagnosed with LCIS in 2014 and ILC in 2017, and is working with other patient advocates, researchers and clinicians to develop a UK equivalent of Lobular Breast Cancer Alliance. In her day job, she is a freelance Cultural Consultant working with cultural organisations and local authorities on charity governance, cultural strategy and community engagement.
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