Rare Black Lives Matter Too began as a group of three (3) RAM members and expanded to well over 50 active rare disease and chronic disability contributors that built the first two DEI solutions, still being offered to rare disease stakeholders to this day.

 

The initiative currently houses 490+ community-based rare disease people from historically disenfranchised communities, on a global scale (February, 2021). Since launching the initial Call to Action, Rare Black Lives Matter Too evolved to include a growing leadership of DEI (diversity, equity and inclusion) experts, effectively developing a collection of DEI solutions now being offered to the rare disease ecosystem through the "Our Lives Matter" DEI Initiative ("OLM DEI Initiative").

 

The OLM DEI Initiative is dedicated to developing MEANINGFUL SOLUTIONS that allow for the development and maintenance of TRUST with the overall goal of eliminating the silos and subsequent misinformation that has plagued the rare disease advocacy environment for over three decades.   

 

Given the world's brutal history of institutionalized human hierarchal systems, trust in the healthcare and therapeutic development industries is justifiably limited. However, the Rare Advocacy Movement has proven, through several mutually beneficial collaborative partnerships, that trust and respect can be earned when both parties engage in respectful, transparent and authentic collaborations, where community-based stakeholders are valued as equals to industry-based stakeholders. 

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Several key opinion leaders and rare disease stakeholders have noted rare disease people of color are notably absent from the conversations that take place at conferences, summits, and various learning events. Recently, the practice of tokenism has allowed one person of color to sit on majority white panels participating in the reinforcement of the institutionalized rhetoric that the problem of diversification lies in limited available non-white talent. This is simply not true.  

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The lack of representation and information from rare disease people of color has had a negative impact on clinical trial diversity, the equitable distribution of patient access programs for life improving therapeutics, and key decisions on the creation and passing of rare disease legislation and policies. Additionally, the lack of diverse inclusion of rare disease people of color in the advocacy environment has resulted in a false perception of prevalence in most rare disease communities as being predominantly white or predominantly black. No disease is predominantly one racial classification. Race is a social construct and as a result is not rooted in any scientific rational.

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The OLM DEI Initiative is the first organized rare disease focused effort to recognize the existence of rare disease people of color, outside of the stigmatized Sickle Cell Disease and Thalassemia communities.

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Historically, people of color have learned that it is not wise to engage in an environment that is dominated by the white, heterosexual population and where no authentic effort has been made to openly welcome all variations of people.

 

Unfortunately, too many in the rare disease advocacy-based landscape have chosen to reject the hard work of facing their privileged egos, the unlearning of biases, and avoid accountability by refusing to acknowledge their mistakes. As a result, the community-based landscape has organized, embraced its naturally diverse nature and have effectively professionalized to work directly with community-focused stakeholders from across the rare disease ecosystem to dismantle the bottlenecks established by toxic advocacy-based silos. 

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In order to effectively learn and understand the impact of race, sexism, ableism and intolerance on today's society, one must first embrace the feeling of discomfort. It is not yet standard to teach people how to properly engage in discussions about taboo dynamics and toxic biases. We all have been conditioned to feel uncomfortable asking questions. The OLM DEI Initiative has taken all of these sensitivities into consideration when designing its DEI programs. As long as those who engage with the OLM DEI Initiative are authentic and honor professional agreements, the OLM DEI team will continue to execute nonjudgmental and anonymous programs designed to provide participants with the freedom to evaluate internal biases without facing professional consequences.

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The patient advocacy unLearning has been deployed in the rare disease advocacy landscape. All community-focused groups interested in meaningful change are encouraged to contact us.