The "Our Lives Matter" Initiative is a global network of rare disease communities dedicated to unification, community-based empowerment and global health equity through the Rare Advocacy Movement.
The OLM Initiative is the first community-based group of rare disease lived experience experts to organize and develop practical, meaningful solutions.
Why "Our Lives Matter"?
a global call for awareness and action
"Our Lives Matter" is the phrase used by disenfranchised and marginalized communities all over the world as a collective call for awareness and action.
OBJECTIVES
The following is a summarized list of OLM objectives:
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address clinical trial diversity and inclusion issues;
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establish patient advocacy protocols for equitable access to patient assistance programs and other advocacy-based resources;
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improve access to life-saving therapeutics for historically disenfranchised rare disease communities;
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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.
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identify trusted industry, advocacy and academic partners who are sincerely dedicated to improving the lives of rare disease, disability, chronic illness, and neurodiverse communities.
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All rare disease-focused stakeholders are encouraged to participate.
EQUITY
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
Inclusion 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
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.