Advocacy & Access Ambassadors

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Advocacy & Access Ambassadors

What is HCC’s Advocacy & Access Ambassadors?

Advocacy & Access Ambassadors are volunteer leaders who help establish and build a strong grassroots network of bleeding disorders advocates in California.
The Ambassadors increase awareness of HCC at the
four California Foundations, too.

Most importantly, Ambassadors lead as advocates on legislative and health policy initiatives that are important to the bleeding disorders and rare disease community. This includes bringing Bleeding Disorders Awareness Month resolutions to their local City or School District and
acting as team leaders at Legislative Day!

Returning Ambassadors mentor new Ambassadors and everyone also has the opportunity to develop a deeper understanding of health insurance
and barriers to care.

Who Should Join?

  • Adults who never had the opportunity to participate in Future Leaders can get advocacy training and stay informed of specific opportunities to advocate on behalf of the bleeding disorders community.
  • Former Future Leaders will find the Ambassador role a great opportunity to continue to grow and utilize their advocacy skills.

Why Should I Join?

  • Connect with other community members, caregivers and stakeholders, within our state and nation through calls, webinars and in-person meetings and events.

  • Participate in local and state events.

  • Connect, learn and address key advocacy and access issues and processes for the bleeding disorders community.

  • Develop relationships with key decision-makers and opinion leaders.

  • Share your story to help other community members by raising awareness.

  • Receive news and information on what advocacy and access action HCC is taking.

  • Participate in setting HCC advocacy priorities.

  • Develop your understanding of insurance and how to assist yourself and others with access barriers.

To Apply:

Qualifications*

  • Must be 18 years old or older

  • Must live in California

  • Must have a bleeding disorder or family member with a bleeding disorder

  • Must be connected with the BD community a passion for advocating for the bleeding disorders community and desire to make change

  • Possess good organizational and communication skills

  • Ability or willingness to learn public speaking

  • Knowledge and understanding of HCC

*Advocacy and Access Ambassadors may not be employees, agents or representatives of a pharmaceutical company, medical device manufacturer, pharmacy benefits manager company, home care, or any other organization generally identified as “industry,” nor may they serve on the board of directors of any such company.

2024 Calendar:

Every other month webinar

6 to 7:30 PM

 

    • January 29th – First webinar
    • March 8 – 10 – NBDF Washington Days (optional)
    • March 18 – Legislative Day
    • March 25
    • May 8
    • July 22
    • September 11
    • November 18

Potential Meeting Topics in 2024:

  • Introduction to Advocacy (Bleeding Disorders Resolutions)

  • Introduction to Health Insurance

  • Legislative Day

  • Understanding Common Barriers to Accessing Health Insurance

  • Following up in the District and the State Funded Programs

  • Analyzing Legislation

  • Reviewing Your Private Health Plan

If you have questions or would like to request a PDF version of the application, please email Andrea at apalladino@hemophiliaca.org

DEADLINE TO APPLY IS JANUARY 16TH!

Commitment of Ambassadors:

  • Two year commitment, with annual recommitment each year after.

    • 1st Year Focus on Advanced Legislative Advocacy

    • 2nd Year Focus on Developing Understanding of Insurance & Assisting with Access Barriers.

    • Third year+ participants can remain as mentors and advocates who receive updates and periodic training and/or advocacy projects.

  • Projects for completion between meetings should take 1 – 2 hours / month.

  • Webinars during year 1 will be every other month for 75 minutes & during year 2 will be every other month for 2 hours each.

  • Leadership role in Legislative Day; priority for travel assistance funds.

  • Webinars will be time for updates, training, mentorship, education, leadership and information on campaigns, issues and progress of HCC’s work.

Thank you to our Sponsors!

 

 

NBDF would like to thank their 2024 sponsors – BioMarin, CSL Behring, Genentech, Sanofi, the Hemophilia Alliance, Pfizer, and Takeda for their support of the SBAC program, and the program’s founding sponsor Novo Nordisk.