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TS Alliance Equity, Diversity and Inclusion Task Force

TS Alliance Forms Equity, Diversity & Inclusion Task Force

The Tuberous Sclerosis Alliance is committed to ensuring equity, diversity and inclusion permeate our organization and our work. To set a direction, create alignment and generate commitment, we recently established an Equity, Diversity and Inclusion (ED&I) Task Force comprised of TSC community members, staff and board members, and representatives from medical and research fields.

Equity is important, as we realize different people have different needs.  We also recognize Diversity and Inclusion cannot fully exist without Equity.  Diversity means we will strive to recognize and engage differences.  Inclusion signifies efforts to make sure everyone we serve feels welcome and included.

The ED&I Task Force met for the first time in January and will continue to meet quarterly to focus on the following goals in 2021:

  1. Increase the diversity of our communication.
    We want to make sure the stories we tell represent our entire community and their unique lived experiences with TSC.
  1. Develop a strategy to better reach, serve and engage underserved, diverse, and underrepresented communities.
    Utilizing the knowledge and experience of members of the task force from those communities, we want to create a plan to reach people where they are and help meet their needs.
  1. Foster a culture of inclusivity at every level of our organization.
    We recognize real, meaningful change involves continued discussion and focused attention on this issue with our volunteers, individuals and families, researchers/medical community, staff, and board as we all work to make the TS Alliance more inclusive and representative.
  1. Bring together the full diversity of families, individuals, and populations with TSC into our community.
    Seek full representation of the diversity we know exists but aren’t currently serving.  We want to ensure everyone’s included. 

As the Task Force moves forward, the TS Alliance will keep you updated on its progress.