Current Activities


Membership & Leadership


The Advocate Work Group is currently working on the following:

Developing Advocacy Leaders:

  1. Mentoring – Heartland advocates are actively recruiting youth and young adults interested in advocacy.  The “older” members of the group will mentor the new advocates in advocacy, leadership, and serving in an advisory capacity.
  2. FaceForward “Campference” – Organized by young adults for young adults, Next Step FaceForward provides young adults with chronic health conditions the education, support, and opportunity to transition to healthy independence and self advocacy.  Heartland promotes the program and accepts applications to send one young adult to the “campference” annually.
  3. American College of Medical Genetics (ACMG) Advocate Partnership Program – In conjunction with the National Coordinating Center for the RCs and ACMG, Heartland sends one or two advocate leaders to this national conference.  Contact the HRCC for more information.
  4. Professional Partnerships Workshop – Heartland Advocate Work Group is overseeing the offering of a workshop for parents to learn skills for partnering with their child’s care providers.  The dates and agenda for the workshop are TBD.

Individualized Health Plan Project (IHP):

Investigator Initiated Small Projects: Periodically, the Heartland issues a Request for Proposals from diverse stakeholders to address priority issues, such as access, education, advocacy, and quality improvement.  Advocacy organizations are encouraged to apply.  If you have a project idea, please contact us.


Contact Information

For more details on the work group and/or its current activities, please feel free to contact the Heartland Regional Coordinating Center.