An authentiC TEAM of diverse people with collective global experiences living rare
The Rare Black Lives Matter Too team began as a group of three (3) RAM members and expanded to well over 50 global rare disease and chronic disability contributors. Since launching the initial Call to Action publication, the Rare Black Lives Matter Too team evolved to include a growing leadership of DEI (diversity, equity and inclusion) experts, effectively developing a collection of DEI solutions bundled into the "Our Lives Matter" DEI initiative.
While the "Our Lives Matter" DEI initiative consists of various programs that offer diversity, equity and inclusion solutions for a variety of stakeholders and organizations at various phases of development and growth, the one program that has become a staple for all proposals is the "Our Lives Matter" DEI unLearning program. This unLearning program has proven to be so effective that it has now been integrated into RAM's rare360 screening program.
The Rare Black Lives Matter Too team is dedicated to developing SOLUTIONS that allow for the development and maintenance of TRUST with the overall goal of eliminating the racial silos and subsequent misinformation that has plagued the rare disease advocacy environment. As the racial silos are eliminated and the advocacy environment authentically diversifies, clinical trials will finally have the opportunity to recruit from a diverse pool of viable participants, nonprofit organizations will be able to grow its constituency through the equitable distribution of patient support resources and opportunities and different variations of people will finally learn how to comfortable connect and communicate with one another improving overall data collection and understanding of community dynamics and incentives.
Given the world's turbulent history with marginalized groups of people, trust in the healthcare and therapeutic development industries is limited. However, the Rare Advocacy Movement has proven, through several successful collaborative partnerships, that trust and respect can be earned when parties engage in a respectful, transparent manner. Plus, an educated DEI expert consultant always ensures a successful partnership in which misunderstandings are quickly clarified and rectified in a professional and respectful fashion, without compromising the collaborative arrangement.
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. This is in large part due to the fact that most in the greater rare disease advocacy community have yet to do the work required to include rare disease people of color, beyond the act of tokenization.
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.
The Rare Black Lives Matter Too team is the first organized rare disease focused group to recognize the existence of rare disease people of color, outside of the often stigmatized Sickle Cell Disease and Thalassemia communities.
Historically, people of color have learned that it is not wise to engage in an environment, that is predominantly white, heterosexual and where no real effort has been made to openly welcome all variations of people. Due to the lack of visibility and representation of diverse people of color in the rare disease landscape, a void has been created. This void was unfortunately filled with toxic biases and misunderstandings that effectively dehumanize people of color, leaving people of color vulnerable during often well-meaning attempts at engagement.
In order to effectively learn and understand the complex topics of race and ableism, one must first become comfortable with discomfort. No one has been taught how to properly engage in discussions about racial dynamics and the harmful biases that we have all been taught since childhood. The discomfort of discussing these extremely important social topics, getting our questions answered and addressing our own internal biases, in a safe, nonjudgmental and anonymous environment is amongst one of several programs developed by the Rare Black Lives Matter Too team for the "Our Lives Matter" DEI initiative.
If your organization is interested in exploring which programs within the "Our Lives Matter" DEI Initiative make sense for your organization, please do not hesitate to contact us.
New Love Ventures
RAM has partnered with New Love Ventures to support the legal and administrative needs of the rare360 program.
New Love Ventures, the creator of the New Love Human Culture trademark, is a novel Venture Philanthropy company determined to support initiatives that serve humanitarian efforts, in addition to supporting equitable distribution of and access to resources, opportunities and the pursuit of happiness for people of all varieties.
New Love Ventures is also a partner of the "Our Lives Matter" DEI initiative, a collective of diversity, equity, inclusion (DEI) programs dedicated to addressing equitable diversification of clinical trials, the rare disease advocacy environment, and correcting racial healthcare disparities.