LEE Research Advisory Council

LEE Definition

Lived Experience Experts (LEEs) are people living with an inheritable bleeding disorder, as well as their caregivers and family members who are directly impacted by the condition. Their diverse backgrounds and experiences provide unique insights into how research and care can be improved. All LEEs have valuable knowledge and can choose to participate in research in various ways. LEE perspectives must guide which research is conducted, how it is carried out, and how the results are shared. Because the inheritable bleeding disorders community is diverse, research must include input from a wide range of LEE perspectives to be successful.

Mission

The mission of the LEE Research Advisory Council is to ensure that lived experience drives and influences the inheritable bleeding disorders research process.

Purpose

• The LEE Research Advisory Council is a voluntary body made up of 6 to 8 LEEs.
• Their role is to provide strategic advice and recommendations to NBDF staff and others focused on promoting and supporting LEE-centric research initiatives, as outlined by the National Research Blueprint (NRB).
• The Council offers a representative and diverse LEE perspective.
• While the Council does not have formal authority over decisions, its recommendations can significantly influence policy, strategy, and operations.

Commitment to HASI Principles

NBDF is dedicated to diverse representation through this initiative to enhance Health Access and Strategic Innovation (HASI), and belonging, ensuring that research findings reflect the full community. Representation from individuals across all socioeconomic backgrounds, cultures, ethnicities, ages, identities, and geographic locations is essential.

Eligibility Requirements

To serve on the LEE Research Advisory Council, individuals must meet the following qualifications:

Age and Residency

• Must be 18 years of age or older.
• Must be a resident of the United States.

Lived Experience

• Must be a Lived Experience Expert: either living with or caring for someone with a bleeding disorder.