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Patient Advocacy Groups for Young Women Affected by Breast Cancer

Patient Advocacy Groups for Young Women Affected by Breast Cancer. Megan Dwyer Brisbane, Australia. Young Women - Advocacy. Background/Statistics Unique issues for young women What is advocacy? Examples How to get started. Young Women - Facts.

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Patient Advocacy Groups for Young Women Affected by Breast Cancer

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  1. Patient Advocacy Groups for Young Women Affected by Breast Cancer Megan Dwyer Brisbane, Australia

  2. Young Women - Advocacy • Background/Statistics • Unique issues for young women • What is advocacy? • Examples • How to get started

  3. Young Women - Facts • One in 14 women with breast cancer is under age 40 • One in eight women with breast cancer is younger than 45 when diagnosed. • 26% of all cancer in females 15-39 years of age and 39% of all cancer in 35-39 year olds. • Women ages 15 to 54 die more frequently from breast cancer than any other cancer.

  4. Young Women - Facts In the U.S.: • almost 12,000 diagnosed annually under 40 • almost 23,000 diagnosed annually under 45

  5. Young Women - Challenges • Compared to older women, young women generally face more aggressive cancers and lower survival rates. • Evidence suggests breast cancer before age 40 differs biologically from the cancer faced by older women. • Since breast cancer occurs at a much lower rate among young women than in our older counterparts, we remain underrepresented in many research studies.

  6. Young Women - Challenges • No effective breast-cancer screening tool • Unique issues for young women: • The possibility of early menopause • Effects on fertility • Questions about pregnancy after diagnosis • Concerns about body image • Challenges to financial stability • Long term survivorship issues • Genetics and hereditary breast cancer

  7. What is advocacy?

  8. Advocacy • Advocacy: The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support. • Patient Advocacy: Promotion and protection of the rights of patients, frequently through a legal process.

  9. Advocacy Taking action in order to to benefit others.

  10. Forms of advocacy • Raising awareness • Providing support • Sharing your story • Lobbying – policy change (government) • Fundraising • Taking action • Attending a conference • Sharing information and experiences

  11. Examples • Young Survival Coalition • Young Action on Breast Cancer • Amazon Heart

  12. Young Survival Coalition • Founded in 1998 • 3 women diagnosed under the age of 35 • Discouraged by the lack of information and research on young women diagnosed with breast cancer, they founded YSC and became a voice for thousands of young women who are diagnosed yearly with breast cancer.

  13. Young Survival Coalition • The premier international organization dedicated to the critical issues unique to young women and breast cancer. • A powerful community fighting breast cancer in young women. • YSC believes no woman diagnosed under 40 should be left to face breast cancer alone.

  14. Young Survival Coalition • YoungSurvival.org • Annual Conference for Young Women Affected by Breast Cancer • ResourceLink Information and Guidebook • SurvivorLink Peer to Peer Support • MetsLink: for young women with metastatic breast cancer • Educational Videos, Audio Files and Brochures • Newly Diagnosed Resource Kits and Treatment Navigator • Adopt-A-Hospital Campaign • Healthy Young Outreach • Ask-the-Expert Series • YSC Newsletter • The Factor Series- Educational Suites • Local support and education programs

  15. Young Survival Coalition Young women facing breast cancer together. www.youngsurvival.org

  16. Young Action on Breast Cancer

  17. Young Action on Breast Cancer Melbourne based voluntary committee of young survivors Formed in 2004 to address advocacy issues Mission: YABC is committed to advocating the unique needs and issues which face younger women affected by breast cancer providing them a voice.

  18. Young Action on Breast Cancer Collaborate with other organisations to ensure the best outcomes for young women diagnosed with breast cancer Seek sponsorship an funding to develop projects Volunteers help bring initiatives to fruition

  19. The Care Package • Provides practical help, and comfort to the newly diagnosed young woman • Supports young women and their families at a time when they most need it • Alleviates some of the financial, domestic and emotional burden faced by younger women when diagnosed

  20. 1st National Conference for Young Women Held in October 2007 in Melbourne Approx. 170 women from across Australia attended Conference was provided free of charge to survivors Workshops held to identify and discuss issues

  21. Amazon Heart

  22. Amazon Heart Adventures for Breast Cancer Survivors

  23. Amazon Heart • Awareness • Media • Telling stories • Peer support • Fundraising • IMPACT!

  24. How to get started • What are you passionate about? • Who shares your passion? • Brainstorm • Develop a plan of action • Get started and stick with it!

  25. Who will you impact?

  26. Thank you! Questions? Ideas? Megan Dwyer megandwyer@cancerqld.org.au

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