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A RAM Collaboration

The Roadmap for Equity Pledge: Establishing Diversity, Equity and Inclusion (DEI) policies and programs within the nonprofit advocacy landscape

As a group of advocates of color, we would like to thank all organizations that have released statements of solidarity regarding the value of Black lives. All vocal stances are greatly appreciated.


It is important that all advocacy organizations are committed to understanding and embracing all individuals regardless of race, skin color, religion, sex, sexual orientation, gender identity or expression, age, disability, marital status, citizenship, national origin, ethnicity, genetic information, or any other identifying characteristics. 


It is imperative that all organizations take a proactive approach when developing programs and policies to ensure that diversity, equity and inclusion (DEI) are an integral part of said programs and policies. 


Statements of solidarity are not sufficient solutions, within themselves, when it pertains to incorporating DEI into the organization’s construct. Rather, actionable solutions are required to develop an environment that is truly equitable and diverse.   


A meaningful actionable solution that an organization can take is to develop targeted policies aimed at improving DEI amongst membership and hiring practices. Current organizational data shows that racial and ethnic diversity is severely underrepresented in senior executive and other leadership positions (U.S. Bureau of Labor Statistics, 2019).  


Some examples of actionable DEI objectives to be considered by all advocacy organizations include: 

  1. Accommodate the consultation of DEI experts into the organization’s annual budget. 

  2. Consult with third party DEI experts to incorporate DEI policies and programs into organizational culture and governance. 

  3. Consult with third party DEI experts to ensure that websites and marketing materials are designed to include and represent diversity, inclusiveness and acceptance of all types of people. 

  4. Utilize third party DEI experts to conduct a review of all resource distribution methods to address any biases that exist against the distribution of organizational resources to people of color. 

  5. Consciously increase the diversity of speakers, presenters and perspectives at events to include advocates and other professionals of color.     

  6. Intentionally create sessions or panels that focus on health disparities/challenges for communities of color within the organization's disease community.


As a nonprofit advocacy organization, we pledge to commit to one or more of the suggested actionable objectives in order to develop a diverse, equitable and inclusive environment for our staff, members, volunteers and the communities that we serve.

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RAM is a rare disease community leadership network founded on the premise of developing mutually beneficial collaborations between rare disease community leaders, influencers, experts and other rare disease stakeholders, with the goal of developing insightful publications dubbed RAM Collaborations. 

RAM removes toxic competition amongst community rare disease leaders, influencers and experts and replaces it with support, camaraderie and mentorship as patient advocacy professional navigate the rare disease industry, regardless of which disease specific community one originally belongs to.  The RAM network encourages unity, collaboration and support amongst the membership, embracing the concept, "a win for one is a win for us all".   ​

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The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.