The "Our Lives Matter" (OLM) Diversity, Equity, Inclusion (DEI) Initiative is a comprehensive set of practical, sustainable solutions designed by the Rare Advocacy Movement's OLM DEI experts and community-based contributors.
Join the people of the naturally 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 for sincere stakeholders
"Our Lives Matter" is the humanitarian call-to-action being used by marginalized and disenfranchised communities all over the world.
In May of 2020, three RAM members initiated a RAM Collaboration that launched the Rare Black Lives Matter Too collaboration. On June 5, 2020, the first Rare Black Lives Matter Too article was published, calling for sincere and meaningful action to be taken by the executive stakeholders of the rare disease therapeutic development ecosystem.
The response was significant. Most advocacy organizations expressed interest in answering the call-to-action but felt unqualified and misinformed.
Between the months of October and December 2020, Rare Black Lives Matter Too evolved into the "Our Lives Matter" DEI Initiative, the first set of community-based diversity, equity, inclusion (DEI) programs developed by over 60 lived-experience experts of color from the rare disease, medically complex and disability communities.
OLM DEI SOLUTION OBJECTIVES
First and foremost, the number one objective of the OLM DEI Initiative is to protect the interests of the naturally diverse rare disease community. The people of the community have suffered siloing tactics for far too long, resulting in life-threatening bottlenecks that prevent families from accessing life-saving treatments and siloed patient assistance programs of which communities of color have been prevented from receiving the benefits of.
The following is a comprehensive summarized list of OLM DEI solution objectives:
address clinical trial diversity and inclusion issues;
establish protocols for equitable distribution of patient assistance programs and other resources;
improve access to therapeutics for all varieties of people;
improve communication between the academic, industry advocacy and community landscapes through diverse and inclusive content development and reviews; and
improve industry and academic understanding of the needs and concerns of the naturally diverse rare disease, medically complex, disability, and/or neuro-diverse communities.
The OLM DEI Initiative is dedicated to the establishment of an international 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.