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Roadmap to equity pledge

-DEI Opportunity for all Nonprofit OrganizatioNS

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.

  7. Blind the demographic information of all applicants for the distribution of resources and/or opportunities until the decision to award said applicants have been made. 


All nonprofit patient advocacy and community service organizations that take the Roadmap to Equity Pledge agree to commit to one or more of the suggested actionable objectives in order to develop a diverse, equitable and inclusive environment for the staff, members, volunteers and communities that they serve.

Hands Up

Rare Disease Community Focused Nonprofit Organizations

Dedicated to Diversity, Equity & Inclusion

As of 2020, the rare disease advocacy environment is racially siloed, with rare disease affected people of color disproportionately not being included in the resource distribution and activities of the greater rare disease advocacy environment. The following organizations have taken the Roadmap to Equity Pledge, effectively working towards creating a more diverse, equitable and inclusive rare disease advocacy ecosystem.

The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited. The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this rare genetic condition.

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Avery's Hope provides financial assistance to rare GI disease patients and their families who have exhausted all financial alternatives on their rare patient journey. Money raised will benefit the HOPE Family Fund for the Department of Gastroenterology, Hepatology & Nutrition at Children's Hospital of Philadelphia, The Acacia Puleo Small Bowel/Liver Transplant Patient Assistance Fund at Children's Hospital of Pittsburgh and Patient Assistance for children who have developed GI complications from cancer, or cancer treatments, at St. Jude Children's Research Hospital.
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The IgA Nephropathy Foundation’s mission is to be a patient-centric organization focused on finding a cure for IgA Nephropathy. Using the power of the patient community we are focused on funding research, using patient advocacy to empower our patients, and building a network of support. As a patient run organization, they work together with the hope of finding better treatment options and the ultimate cure.
The IgA Nephropathy Foundation is by patients, for patients.
Pompe Alliance is a public services organization on mission to provide supportive services, education and information to patients, caregivers, medical professionals and community stakeholders for the benefit of all members of the Pompe Disease community.
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Remember The Girls' mission is to raise awareness of the many issues facing female carriers of X-linked genetic disorders; to provide a forum for X-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry X-linked disorders.

Has your organization taken the

Roadmap to Equity Pledge?

Join the effort to change the institutionalized fabric of the current rare disease advocacy environment from racially siloed to all inclusive and equitably accessible to the already diverse group of people that exist in this world, affected by rare disease.

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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 rare disease focused community advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based professional network and Center of Insight (COI) for rare disease focused stakeholders seeking authentic connections and unadulterated community insights. The RAM membership is comprised of a network of patient advocacy community expert professionals that have vowed to abide by the established Code of Conduct for Membership. As a result, every current RAM member has made a public vow to always act in the best interest of the rare disease community.