Rare Kids

Rare disease parents and caregivers have a legitimate need to be incredibly involved in leading the charge for their children with medical needs. They also work hard to build open, safe, and supportive environments. However, there is also a need for children to have their own opportunity to speak up and advocate on their own if it is possible. This is part of their emotional development and path to maturity.

The purpose of this effort is to test out forming a nonpartisan program to advance the voices of rare disease youth. Led by young adults and teens, the project will spotlight a monthly in-depth story of a rare disease child as well as build an ongoing stream of Instagram reels with rare kids answering pertinent questions such as, “What would you like to or wish you could say to your doctor that you haven’t?” and “How do you talk to your friends about your condition?”

“There can be no keener revelation of a society’s soul than the way in which it treats its children.”

– Nelson Mandela

Our program’s platform will be visioned by and created by kids mentored by young adults and be a central place for their rare voices to be heard and honored.

Program Objectives:

  • Build a platform for young future leaders to develop their self-advocacy skills
  • Expand public access to voices of patients who are rare disease youth
  • Improve the understanding of stakeholders and public of the needs of rare youth
  • Provide youth with rare policy and advocacy activities to expand their understanding
  • Create momentum for positive system change to improve the lives of rare disease families

Please contact us directly to discuss Rare Kids at lab@upequity.org.

Interested in participating or nominating a rare kid you know to the program? Let us know! We welcome your interest!