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 industry-focused solutions.

 

The initiative currently houses 510+ 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 have been notably absent from the conversations that take place at conferences, summits, and various learning events. Recently, the practice of tokenism has allowed one "diverse-representing" individual to sit amongst a homogenous panel, participating in the reinforcement of the institutionalized rhetoric that the problem of diversification lies in limited available talent. This is simply not true.  

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The lack of heterogenous representation and information from the rare disease community 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 in the advocacy environment has resulted in a false perception of prevalence in most rare disease communities as being predominantly of one racialized group. 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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Historically disenfranchised individuals have learned that it is not wise to engage in an environment where no meaningful efforts have been made to openly welcome all variations of people.

 

Unfortunately, several rare disease stakeholders have chosen to reject the hard work of facing their privilege, the unlearning of biases, and have chosen to avoid participating in meaningful DEI initiatives. The anti-DEI movement is not stopping the "Our Lives Matter" initiative. The community-based landscape has organized and will continue to embrace its natural diversity. The OLM initiative will continue to the hard work of dismantling bottlenecks that reinforce toxic silos across the rare disease drug development continuum. All community-focused stakeholders interested in continuing meaningful change are encouraged to contact us.