Starting a Gynaecological Cancer Advocacy Patient Group

Patient groups can support people throughout their cancer journey by increasing their knowledge and coping skills. At the same time, patient groups can act as advocates for patients in discussions with health professionals, researchers, the healthcare system, and local and national government. There may already be general cancer advocacy groups in your country, but these groups frequently include participants diagnosed with many different types of cancer.


Women with gynaecological cancers have specific advocacy and support needs and may be reluctant to share their experiences as members of general cancer groups, especially in countries where these cancers still evoke shame, embarrassment or stigma.


This new series of ENGAGe factsheets is a practical guide for anyone who wants to start a new gynaecological patient advocacy group. The toolkit begins by explaining how to establish the key facts and challenges in your country and hold your first meeting, and then shows you how you build firm foundations to grow and sustain your group.


Starting a new patient group is exciting and fulfilling but, like any pioneering work, the road ahead will not always be straightforward. But remember, the gynaecological cancer advocacy groups that are now large and successful organisations began just like you and your supporters: a few people inspired by the common vision of improving the lives of women with gynaecological cancer and their families.


Introduction - Starting a Gynaecological cancer patient advocacy group

Factsheet 1: Identifying your needs

Factsheet 2: How to start a gynaecological cancer support and advocacy group

Factsheet 3: Confirming your remit and three-year plan

Factsheet 4: Recruiting and managing volunteers

Factsheet 5: Structure and governance

Factsheet 6: Membership models

Factsheet 7: Strategy for growth and impact

Factsheet 8: Budget and sponsorship

Factsheet 9: Marketing and Communications

Factsheet 10: The importance of partnerships

Introduction to Factsheet 11 & 12: Campaigning and influencing change

Factsheet 11: Guide to Patient Advocacy

Factsheet 12: Putting gynaecological cancer on national and European agendas

Factsheet 13: Evaluation and sustainability

Factsheet 14: Supporting patients and families

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