The "Our Lives Matter" Diversity, Equity, Inclusion (DEI) Initiative is a comprehensive set of practical, sustainable solutions designed by the Rare Advocacy Movement's Rare Black Lives Matter Too team of experts and community-based contributors.
Join the diverse rare disease community in changing the biased institutionalized fabric of social structures surrounding the healthcare system, the biopharmaceutical industry and the nonprofit patient advocacy landscape.
Why "Our Lives Matter"?
authentic DEI solutions
"Our Lives Matter" is the humanitarian call-to-action being used on a global scale.
In May of 2020, three RAM members initiated a RAM Collaboration that launched the Rare Black Lives Matter Too team. On June 5, 2020, a Rare Black Lives Matter Too article calling for meaningful action to be taken across the rare disease landscape was published.
The response was significant. Most advocacy organizations expressed interest in answering the call-to-action but felt unqualified and misinformed.
As a result, in partnership with New Love Ventures, the Rare Black Lives Matter Too team launched the "Our Lives Matter" DEI initiative, the first collection of customizable diversity, equity, inclusion (DEI) programs that have been developed by community-based experts to guide various rare disease-focused businesses authentically interested in:
addressing clinical trial diversity and inclusion issues,
equitable distribution of resources and opportunities,
fair and equitable drug development for all varieties of people,
diverse and inclusive content development, and
understanding the needs and concerns of the diverse rare disease and chronic disability communities.
The "Our Lives Matter" DEI initiative is dedicated to the establishment of a social culture of inclusion and acceptance of all types of people irrespective of any given or acquired differences. All rare disease-focused stakeholders are encouraged to participate.
Equity is freedom from bias, prejudice or favoritism. Social equity is the active commitment to fairness, justice and impartiality within procedures, processes, and distribution of resources by institutions or systems. To obtain the capability of identifying equity issues, one must identify and investigate the root causes of outcome disparities by extracting insights from the disenfranchised community in question. To correct for equity issues, one must engage seasoned experts of the disenfranchised community into the development of meaningful solutions.
Inclusion (not to be confused with tokenism) is the action or state of including or being included within a group, institution, structure or program. Inclusion philosophy rests on the idea that every individual, regardless of his/her/their differences, has the right to be incorporated fully into the fabric of society.
Diversity is the presence of individual differences that include but are not limited to one’s gender, sexual orientation, ethnicity, nationality, socioeconomic status, language, physical abilities, age, religious beliefs or lack thereof, the shade of one’s skin color, political perspective and/or other ideologies.