Breast cancer patient advocacy programme


Representatives of breast cancer patient advocacy groups are warmly invited to participate in ABC4 and actively contribute to the scientific programme and consensus session.
Furthermore, in collaboration with the Breast Cancer Patient Advocacy Committee, including several leading breast cancer patient advocacy groups worldwide, specific
additional patient advocacy sessions have been scheduled.


BREAST CANCER PATIENT ADVOCACY COMMITTEE

Coordinator:
Fatima Cardoso
, Breast Unit, Champalimaud Cancer Center, Lisbon, PT

Bertha Aguilar Lopez, ULACCAM, Mexico City, MX
Anna Cabanes, Susan G. Komen, Washington, US
Maria João Cardoso, MamaHelp Association, Lisbon, PT
Dian “CJ” M. Corneliussen-James, METAvivor Research and Support, Annapolis, US
Renate Haidinger, Brustkrebs Deutschland e.V., Munich, DE
Danni Manzi, Breast Cancer Care, London, UK
Musa Mayer, Metastatic Breast Cancer Alliance, New York, US
Shirley A. Mertz, Metastatic Breast Cancer Network US, Inverness, US
Gertrude Nakigudde, Uganda Women's Cancer Support Organisation, Kampala, UG
Evi Papadopoulos, Europa Donna, Nicosia, CY
Danielle Spence, Breast Cancer Network Australia, Camberwell, AU


 
          
   
                
                
                
                
                
                
               
                
                


  THURSDAY, 2 NOVEMBER 
    
9:00  Patient advocacy session: Direct patient involvement in ABC research
(Chairs: Bertha Aguilar Lopez, MX - Anna Cabanes, US - Shirley A. Mertz, US)
(Panellists: Bertha Aguilar Lopez, MX - Matthew J. Ellis, US - Shirley A. Mertz, US Danielle Spence AU)
    
 11:00

  Patient advocacy session: Survivorship 101: Work, finances, home and emotional support
(Chairs: Danni Manzi, UK - Gertrude Nakigudde, UG and Evi Papadopoulos, CY)
    Work means more than money (Evi Papadopoulos, CY)     
    Discusssion 
    The support of the other side 
    Discusssion 
    How can I swim in a storm (Gertrude Nakigudde, UG)
  
Discusssion

 18:00  Patient advocacy session: Registries, databases and statistical modelling: making MBC count (Chairs: Musa Mayer, US and Danielle Spence, AU)
    Introduction and Australia STAR project (Danielle Spence, AU)
    Estimation of the Number of Women Living with Metastatic Breast Cancer in the United States
   (Musa Mayer, US)
    The new German Cancer Registry (Norbert Marschner, DE)
    Breast Cancer Care UK (Danni Manzi, UK)
    Discussion

    
  FRIDAY, 3 NOVEMBER      
 
 18:00  Patient advocacy session: ABC Advocacy: Managing side effects, sexual issues and fertility 
(Chairs: Dian “CJ” M. Corneliussen-James, US and Renate Haidinger, DE)

    How can physicians help to avoid or treat side effects? (Christoph Thomssen, DE)
    How can patients help to avoid or treat side effects? (Renate Haidinger, DE)
    Discussion
    Intimacy - Starting Anew (Dian “CJ” M. Corneliussen-James, US)
    Fertility -The Joys and the Risks (Dian “CJ” M. Corneliussen-James, US)
   Discussion

  SATURDAY, 4 NOVEMBER 
 
 11:00  Report from ABC Patient Advocacy Committee (Speaker to be confirmed)