The Role and Objectives of Patient Organizations Around the World

1. The Role and Objectives of Patient Organizations Around the World A presentation by:Mark Krueger, MPH27 March 2010

2. We are all cancer survivors • New words are being used to describe what once were cancer “victims”: • “Cancer survivors” • Advocates say a cancer patient is a “cancer survivor” from diagnosis for the rest of life • All of us affected by cancer in one way or another - patients, friends, family, health professionals - are “cancer survivors”

3. Cancer survivorship movement • “Empowering” the cancer survivor • The advocacy skill set • Cancer-related advocacy Elizabeth Clark, PhD Nancy Stovall

4. The informed and engaged patient

5. The roles of cancer patient groups Support Education Advocacy Research

6. What cancer groups are doing • Nationwide cancer support and advocacy • organization • “Dress Down Day” for myeloma awareness • and fund raising • “Mile for Myeloma” and “Run or Walk for • Myeloma UK” public awareness events • US chapter-based research and advocacy • group for all hematologic cancers • New free booklet “Understanding Drug • Therapy and Managing Side Effects” • Network of multiple myeloma • patient groups in Europe • Support, education and advocacy • Connected to policy makers

7. Polish leadership is evident

8. Polish Myeloma Patient Help Association: Setting High Standards Association governance Growing membership IV Congress SUCCESS Cooperation between board and staff Advocacy Connections to scientists and researchers

9. Meeting the challenges of the future Potential future projects • Use social media (FaceBook, Twitter, etc.) for education • Use Skype to connect with other chapters and groups • Translate existing materials from other organizations (i.e. The Leukemia & Lymphoma Society, etc.) • Create cancer patient blogs for leukemia, lymphoma and myeloma • Begin annual “March for Research” event

10. Changing external environment Pressures are increasing and affect what cancer groups can and must do: • Increasing number of patients from better screening • Growing use of health technology assessment (HTA) • Decreasing budgets for cancer care and research • Increasing barriers to access to treatment Choices must be made - cancer groups must speak up

11. Patients are at the Heart of the Global Movement

12. You are empowering

13. Thank you.