Collaboration can be key for health access!  At the State level, it makes us stronger advocates.  At your doctor’s office, you and your care team work together to improve your personal health access!

Our speaker Adrienne Shapiro of Axis Advocacy is a patient advocate as well as a caregiver in her family.  In the clip above, she discusses one of the ways collaboration can help you personally.  

For the full video, chapter titles and slide deck, please see below:



Chapter Titles:

0:00 Intro
1:20 Introduce speaker Adrienne Shapiro
6:03 California Rare Disease Access Coalition
Shared Priorities of Rare Disease Groups
14:54 Benefits of Rare Disease Organizations Collaborating with One Another
15:37 Can I Benefit from Collaboration Personally? Axis Advocacy
24:18 Shared Decision Making
27:08 Potential Partners in Shared Decision Making

Benefits of Statewide Collaboration:
  • Coalitions with other rare disease groups
  • Increased advocacy influence
  • Build a stronger, combined voice
  • Increased clout in discussions with the Department of Health Care Services

Benefits of Personal Collaboration:

  • Patients work with their entire care team 
  • Shared decision-making improves patients’ access to care and treatment
  • Members of the team communicate with each other to ensure comprehensive treatment