The "Our Lives Matter" Diversity, Equity, Inclusion (OLM DEI) Initiative is a global network of rare disease communities of color dedicated to unification, community-based empowerment and global health equity through the Rare Advocacy Movement.
The OLM DEI Initiative is the first community-based group of rare disease lived experience experts to organize and develop practical, meaningful DEI solutions.
Why "Our Lives Matter"?
call-to-action for allied stakeholders seeking actionable DEI solutions
"Our Lives Matter" is the community-based 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, as the majority of patient advocacy organizations are siloed.
Between the months of October and December 2020, Rare Black Lives Matter Too evolved into the "Our Lives Matter" DEI (OLM DEI) Initiative, an international group of rare disease lived-experience experts of all human varieties, with a specialized focus on rare disease people of color, who work in collaboration with industry and academic allies to launch the world's first professional community-based DEI programs for the therapeutic development industry.
OLM DEI SOLUTION OBJECTIVES
The following is a comprehensive summarized list of OLM DEI initiative objectives:
address clinical trial diversity and inclusion issues;
establish patient advocacy protocols for equitable access to patient assistance programs and other advocacy-based resources;
improve access to life-saving therapeutics for historically disenfranchised rare disease communities;
correct the miscommunication that has resulted in the siloing of patient advocacy resources and the distrust of academic and industry based clinical research and the distrust of the healthcare industry by the black, brown and indigenous communities.
identify trusted industry, advocacy and academic partners who are sincerely dedicated to improving the lives of the naturally diverse rare disease, disability, chronic illness, and neurodiverse communities.
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.