"We CARE About Rare Lives"

A community-facing message delivered on behalf of a conscious collective of rare disease-dedicated patient advocacy organizations and biopharmaceutical companies has officially launched today, February 28, 2021 titled, "We CARE About Rare Lives," in honor of World Rare Disease Day.

The "We CARE About Rare Lives" directory is a community-based diversity, equity and inclusion (DEI) initiative developed to provide the advocacy-, industry- and academic-based landscapes an opportunity to authentically respond to the "Our Lives Matter" call to action that was officially launched in September of 2020 by Rare Black Lives Matter Too.

In order to truly serve the best interests of the naturally diverse real world rare disease community, statements in solidarity must be backed through the support and implementation of meaningful actions that benefit the collective community. The only way to know if a DEI solution is meaningful to the collective community is through authentic community-based partnerships and the establishment of mutually beneficial collaborations with community-based experts.

Our Lives Matter, a message deployed by RAM's "Our Lives Matter" DEI Initiative, is the first, and currently only, community-based educational DEI program developed and deployed by rare disease people of color, rare disease LGBTQIA+ individuals, rare disease intersex people, allies and others to provide insights that are required to begin the process of healing and working towards establishing much needed trust, irrespective of the historical practices of exploitation and manipulation that are still being practiced to date.

The real world rare disease ecosystem is naturally diverse. The "Our Lives Matter" DEI Initiative is designed to work with authentic stakeholders interested in diversifying the advocacy landscape by making resources and opportunities equitably accessible, irrespective of socioeconomic capabilities.

Diversity is more than just a buzz word and should be valued and approached with respect.

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 the DEI experts of the 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.

While most failed, often offensive, DEI campaigns deployed in the rare disease landscape are driven by implicit bias, there are rare disease advocacy stakeholders that have chosen to organize a community-facing resistance to authentic DEI solutions utilizing a variety of historically established tactics. For example, redefining the term "diversity," tokenizing ethnic professionals recruited from outside of the rare disease community and of whom have no understanding of the rare disease experience or community dynamics, and refusing to acknowledge the inclusion, access and race-based issues that breathed life into today's DEI discussions.

The global people of the rare disease community would like to thank each industry-based company and advocacy-based organization that consciously chose to take meaningful steps towards progress by answering the "Our Lives Matter" call-to-action.

Summary of outreach data:

  • 500 biopharmaceutical companies and 4 rare disease nonprofit organizations were actively informed of the "Our Lives Matter" call-to-action.

  • 432 biopharmaceutical companies acknowledged receipt of the "Our Lives Matter" call-to-action information.

  • 21 companies/organizations that were not originally contacted reached out directly to learn more about the "Our Lives Matter" DEI Initiative within the months of January and February 2021.

  • 172 companies/organizations signed a Mutual Confidentiality Agreement (CDA) in order to receive an "Our Lives Matter" DEI Initiative proposal detailing the community-based DEI programs available to them after introductory discussions.

  • 6 biopharmaceutical companies and 1 nonprofit organization openly expressed extreme disinterest in participating in "this type of program."

  • 54 companies/organizations expressed enthusiastic interest in participating but required a reference, listing which companies/organizations have already participated. Through a collective conscious effort to identify the companies/organizations authentically interested in learning DEI from the rare disease community's perspective, Rare Black Lives Matter Too established specific rules. One very important rule was that under no circumstances were the identities of any participating companies/organizations to be provided to incentivize participation. This rule was one of several implemented to eliminate those that are seeking DEI campaigns for the trend, as opposed to the lessons learned, from being featured in the "We CARE About Rare Lives" initial publication and upcoming feature opportunities.

  • 579 collective hours have been reported by Rare Black Lives Matter Too between the months of October, 2020 and February, 2021 for communications with various rare disease stakeholders regarding the "Our Lives Matter" DEI unLearning Initiative.

  • 6 rare disease dedicated companies/organizations decided that their team authentically wanted to learn DEI from the naturally diverse people of the rare disease community, effectively enrolling at least 5 participants each into at least one of the "Our Lives Matter" DEI program offerings.

The above summary of the outreach data shows that the rare disease advocacy environment, in addition to the biopharmaceutical sector, in the majority, are frustratingly hesitant to embracing actionable DEI solutions developed by community-based experts. Perhaps, it is because the "Our Lives Matter" DEI Initiative was developed by a collective of people of color, LGBTQIA+ individuals, intersex people of a variety of racial categories, all of whom are "Living Rare." Or, it could be the fact that the "Our Lives Matter" DEI Initiative was developed exclusively utilizing funds raised by the rare disease community of color without the influence of the industry-advocacy filters.

Whatever the reasons, the real world community takes comfort in the fact that there are six rare disease stakeholder companies/organizations that were capable of seeing the value in participating in the "Our Lives Matter" DEI Initiative, the first and only rare disease community-based DEI research and training model developed by a collective of 58 rare disease experience experts with a diverse blend of identities that include but are not limited to people of color, LGBTQIA+, intersex individuals, and a handful of authentic allies.

The decision to develop the "Our Lives Matter" DEI Initiative through community-based resources, effectively denying all industry-based financial contributions, was made consciously. As a result, the "Our Lives Matter" DEI Initiative is the only DEI network that has not had damaging patient advocacy filters applied to its program designs. Patient advocacy filters are responsible for failed clinical trial recruitment goals, burdensome clinical trial protocols, the currently and historically siloed rare disease advocacy landscape, and the repetitive half-hearted duplication of authentic community-based initiatives that result in significant hurdles to progress.

During the months of March and early April, as these six extraordinary teams of rare disease stakeholders journey through their unique paths of unLearning cognitive biases, and gain a more accurate understanding of the community-based rare disease perspective, Rare Black Lives Matter Too is confident that the "Our Lives Matter" DEI Initiative will effectively provide these six rare disease stakeholder groups with the building blocks required to begin the journey towards building trust between industry-based stakeholders and the real world rare disease community.

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