Image by Kelly Sikkema

Roadmap FOR equity pledge

-for Rare Disease Advocacy OrganizatioNS

The Roadmap for Equity Pledge: ENCOURAGING the development of Diversity, Equity and Inclusion (DEI) policies and programs within the nonprofit Rare disease Patient advocacy landscape

A group of diverse advocates of color, encouraged by the surge of statements in solidarity regarding the value of Black lives, launched the Roadmap For Equity Pledge.

 

The pledge required advocacy organizations to commit to understanding and embracing the perceptions of all individuals regardless of racial classification, skin color, religion, biological sex, sexual orientation, gender identity or expression, age, disability, marital status, citizenship, national origin, ethnicity, genetic information, and/or any other identifying characteristics. 

 

The pledge called on all organizations take a proactive approach when developing programs and policies to ensure that diversity, equity and inclusion (DEI) are an integral part of its culture, programs and policies. 

 

The pledge explained that statements in solidarity are not sufficient solutions, within themselves, when it pertains to incorporating DEI into an organization’s construct. Rather, the pledge called for actionable solutions designed to develop an environment that is truly equitable, inclusive and diverse.   

 

The pledge called on each organization to implement meaningful solutions to develop targeted policies aimed at implementing DEI protocols and strategies that effectively establish an inclusive environment for its constituents, membership and employment. The pledge called for each organization to maintain a diverse and inclusive corporate environment and public profile, by adopting an authentic desire to unLearn biases and misunderstandings that have prevented the inclusive diversification of the organization's constituency to date.

 

Some proposed actionable DEI objectives to be considered by each advocacy organization include the following: 

  1. Budget for the costs of appropriate third party DEI expert consultation into the organization’s annual budget to incorporate DEI policies and programs into organizational culture and governance. 

  2. Consult with third party DEI experts to ensure that websites and marketing materials do fall into the category of tokenism and instead are designed to include and represent real world diversity, inclusiveness and acceptance of all variations of people. After the organization's website(s) has been designed in an inclusive and diverse manner, enroll the website into the "Our Lives Matter" DEI Certification program and earn the honor of having the "Our Lives Matter" Certified digital badge at the footer of the websites' domain.

  3. Utilize third party DEI experts to conduct a review of all resource distribution methods to address any biases that may exist against the equitable distribution of resources and opportunities to the global communities of color, the LGBTQAI+ community, and/or the disability community. 

  4. Consciously increase the diversity of speakers, presenters and perspectives at events to include diverse expert advocacy professionals, avoiding the practice of tokenism.     

  5. Intentionally create sessions or panels that focus on health disparities/challenges for the real world diverse rare disease community within the organization's disease-specific community and address solutions and actions that may be taken to correct healthcare disparities/challenges for communities of color, especially those with debilitating chronic conditions. It is not enough to simply identify issues. Upon addressing issues, actionable solutions must be communicated and addressed.

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

All nonprofit patient advocacy and community service organizations that took the Roadmap for Equity Pledge have agreed to commit to one or more of the suggested actionable objectives in order to take steps closer to developing a more diverse, equitable and inclusive environment for the staff, members, volunteers and communities that rely on its services and support.

The pledge period has come to a close.

Hands Up

Rare Disease Advocacy Focused Nonprofit Organizations

claiming dedication to Diversity, Equity & Inclusion (DEI)

In 2020, the rare disease advocacy nonprofit landscape was recognized as a racially siloed environment, with a predominate dedication to serving the needs of white rare disease families caring for rare disease children. 

 

Rare diseases affect all varieties of people. Rare diseases do not discriminate. Demographic data reports that people of color are disproportionately not being included in the distribution of patient support resources and opportunities made available through the greater rare disease advocacy nonprofit environment.

 

The following organizations have taken the Roadmap for Equity Pledge, effectively pledging to create 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.
At RNE, we are learning, reflecting on and building a strategy to be part of the solution. RNE has created a Diversity Committee so that the organization can become an ally in the pursuit of racial justice, join the voices of our community members, and work together to create more inclusive resources. We hope this opens new dialogues and that people feel comfortable providing us with crucial feedback. We seek to learn, build, grow and flourish together as equal members of a just and diverse society.
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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.

Is your organization seeking meaningful DEI solutions?

 
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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-based rare disease leaders, influencers and experts and replaces it with support, camaraderie and mentorship as patient advocacy professionals navigate the drug development continuum, regardless of which disease specific community one originally belongs to.  The RAM network encourages unity, collaboration, professionalism 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 novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.