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"We CARE About Rare Lives"

A message from various rare disease-focused organizations and companies, "We CARE About Rare Lives," is scheduled to publish via the launch of a community-managed directory of nonprofit organizations and for profit companies that have chosen to answer the "Our Lives Matter" call to action, a message deployed via the Rare Advocacy Movement on behalf of the diverse people of the global rare disease community.



Diversity is the latest hot topic.

As more and more businesses realize that diversity is good for business, many businesses are attempting to "diversify" and are getting it all wrong. The rare disease landscape is no stranger to this latest phenomenon and while some have chosen to work directly with experts of the diverse rare disease community, others have decided to remain in their comfort zones and task detached corporate PR specialists with developing the appearance of valuing and understanding the dynamics of diversity and inclusion.


As a result, there has been an uptick in tokenism.


What is Tokenism?


Tokenism: The practice of making only a perfunctory or symbolic effort to give the appearance of being inclusive to members of non-white heterosexual groups, especially by recruiting men of color or women of color in order to give the appearance of racial and/or sexual equality within an organization and deflect accusations of discrimination.


Tokenism emerged as a solution that, though earnest in effort, only acknowledged an issue without actually solving it. Tokenism is superficial diversity without inclusion. It is the absence of consistently making the effort to include diverse variations of non-white heterosexual people. It is being aesthetically diverse, but not attitudinally diverse. It is without the effort or desire to authentically contribute to the efforts of diversity, equity and inclusion practices.


Most clinical research organizations, biopharmaceutical corporations, patient advocacy organizations and the various stakeholders that consult and advise on rare disease matters have cultivated both corporate environments and social profiles that typically do not include diverse people (i.e. people of color, people in the LGBTQIA+ community, people with disabilities, etc.). And because of this historical lack of diversity, rare disease stakeholders cannot expect the diverse people of the rare disease community to suddenly trust their company, brands, campaigns, applications and content. Trust has to be earned and authentically consistent.


"We CARE About Rare Lives" is COMING SOON.


RAM is offering actionable solutions through the "Our Lives Matter" DEI initiative to the rare disease ecosystem. Over 200 individual rare disease focused companies have been contacted and directly informed of the "Our Lives Matter" call to action.


Those who choose to enroll and participate in one of the most powerful unLearning solutions developed to date, the "Our Lives Matter" DEI unLearning program, a program designed using the insights of over 50 global rare disease contributors to the Rare Black Lives Matter Too team, will be celebrated and highlighted to the diverse people of the rare disease community on February 28, 2021, rare disease day, in the "We CARE About Rare Lives" Directory.



#OurLivesMatter #BlackLivesMatter #IndigenousLivesMatter #NativeLivesMatter #Diversity #Equity #Inclusion #RareLives #RareDiseases #WECARE

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The Rare Advocacy Movement (RAM) is a rare disease community-based advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based Center of Insight and Collaboration for rare disease focused stakeholders seeking authentic collaborations and comprehensive community insights. Each current RAM member has made a public vow to always act in the best interests of the rare disease community through the adopted Code of Conduct for Membership or risk being removed from the RAM membership and network.