Updated September 26, 2018


 |  mbc_advocacy_ca@outlook.com

Metastatic Breast Cancer Advocacy IN Canada

Advocacy Groups


Canadian Breast Cancer Network


www.cbcn.ca

CBCN is supporter of the metastatic breast cancer community.  Its initiatives include:


  • Canadian version of A Guide for the Newly Diagnosed
  • Established a searchable database Medsearch of MBC drugs in Canada. 
  • Living Legacy 2015 and 2017 to raise awareness of MBC
  • Waiting for Treatment: timely equitable access to drugs for metastatic breast cancer 2015
  • Advocacy workshops:  Next scheduled TBD
  • MBC time, an awareness campaign released in October 2016 and 2017
  • Never too Young - a psychosocial resource for young women

 


Rethink Breast Cancer

www.rethinkbreastcancer.com

Rethink Breast Cancer has established an MBC Advisory Board to advise it as it expands and enhances its activities to assist people living with MBC and their caregivers and to help inform their annual priorities for MBC initiatives. 


Rethink Breast Cancer and CBCN are the patient representative groups for the pCODR (pan Canadian Oncology Drug Review). 


Rethink has undertaken a #MBCintheDark campaign to raise awareness of the lack timeliness and transparency in key parts of the government drug funding process. 


MBC Priority Setting Partnership


www.breastcancerjla.com


With the assistance of the James Lind Alliance, the PSP has worked with clinicians, patients, patient groups (CBCN and Rethink) and caregivers to establish the Top Ten List of research priorities. 



MBC Alliance


www.mbcalliance.org


MBC Alliance is a group of breast cancer charities and advocacy groups, pharmaceutical companies and individual patients in the U.S. who are working together on MBC Issues.  Over the past several years, they have released and supported some key advocacy publications:




Other US and UK MBC advocacy organizations and projects

Metastatic Breast Cancer Network - 
www.mbcn.org

Metavivor  - www.metavivor.org

Metup -
www.metup.org


Breast cancer care UK - www.breastcancercare.org.uk/secondary


  • Including reports on gaps with diagnosis,  statistics, support and nursing care. 



The Metastatic Breast Cancer Project


www.mbcproject.org

Researchers at the Broad Institute at MIT and Harvard University are working directly with patients in the US and Canada to collect samples and clinical information to support research initiatives and accelerate discoveries. 



Patient Representatives

Including the patient voice is an emerging trend among provincial health agencies and hospitals.  We encourage metastatic breast cancer patients to join where possible to make sure our issues are not overlooked.  We are interested in learning about your experiences. 

We hope to build on this preliminary list, please contact us with details of other programs. 



Cancertainty


http://www.cancertaintyforall.ca


A coalition of patient groups, cancer health charities, and caregiver organizations that have joined  improve the affordability and accessibility of oral take-home cancer medications in Ontario and Atlantic Canada.



Canadian Cancer Survivor Network


http://survivornet.ca/en/


The Canadian Cancer Survivor Network's mission is to promote health by providing educational resources to cancer survivors and caregivers.  Its A Seat at the Table initiative identifies ways for patients and caregivers to get involved. 



It hosts webinars and conferences, including: