PATIENTS' DATA POWERING PROGRESS

Diversity, Equity, and Inclusion for Rare Disease

What is DEI?

RARE-X believes that diversity, equity, and inclusion are the core of our work. We strive to promote the advancement of inclusive rare disease communities that value diverse, innovative strategies to solving the complex needs of rare disease patients. We accomplish this mission by engaging rare disease communities, leveraging national multi-disciplinary partnerships, identifying best practices for collecting diverse data, and fostering an organizational culture of continuous internal reflection and proper adjustment to accomplish our vision.

Diversity:
Diversity involves intentionally building teams that respect individual differences not limited to characteristics based on the following: Race, Disability Status, Religion, National Origin, Ethnicity, Military Service, Age, Socioeconomic Background, Gender, Language, Sexual Orientation, Gender Identity, Culture, Political Perspective.

Equity:
We assume there are biases that exist in society that create an unequal playing field for many. Equity involves leveling the playing field for every individual by providing the necessary resources to ensure equal access to opportunities for success.

Inclusion:
Inclusion embodies the act of including everyone in all aspects of society regardless of their unique characteristics and experiences, understanding that this uniqueness brings necessary perspective to the larger society.

Why is it important?

DEI programs and policies are essential to promoting equal representation for all. Research has shown the following values added: 

  • Boosts team performance 
  • Innovation 
  • Promotes equal access to opportunities
  • Creativity 
  • Boosts engagement 
  • Promotes thinking from a broader global perspective 
  • Positive environment
  • Profitability 
  • Trust
  • Feelings of belongingness 
  • Productivity 
  • Employee engagement 
  • Reduced conflict and improved relationships 
  • Better health
  • Increased resilience and trust 
  • Levels of learning and performance 
  • Reduced stress 
  • Happier more productive employees 
  • Greater effective commitment 
  • Culture of positivity 

RARE-X’s Ongoing Commitment to DEI

RARE-X’s Commitment is:
Initially, our approach focuses on the diverse and equitable collection of data from multiple, unique stakeholders via the following methodologies: surveys, focus groups, and interviews that add the necessary, variable perspectives to these critically important issues.

Typically, the collection of data from other national organizations address age, sex, and race/ethnicity. Our approach is to incorporate these traditional methods of defining diversity and expand upon them to include other critical factors, such as income, disability, language discordance, health access, and gender identity, in this and future projects through ongoing listening and learning–a meaningfully rich, ongoing dialogue.

We acknowledge that any discussion of diversity, equity, and inclusion must be informed by other, less frequently discussed, and analyzed considerations, such as culture and privilege, which have historically, too often, marginalized or neglected certain communities’ access and choice in healthcare and medical research. Put simply, we are committed to authentically engaging in an ongoing, meaningful dialogue from those whom we interact with, but also to foster and adopt lasting changes to the lives of those of us who fall under the ever-widening umbrella known as rare disease.

How RARE-X approaches DEI

As we embark on a journey to address DEI concerns within the rare disease space, we commit to the following:

Our efforts will constantly evolve in addressing DEI. Initially, our approach focuses on data collection– surveys; focus groups; and interviews– which adds necessary, variable perspectives to these critically important issues.

Typically, the collection of data from other national organizations address age, sex, and race/ethnicity. Our approach is to incorporate these traditional methods of defining diversity and expand upon them to include other critical factors, such as: income, disability, language discordance, health access, and gender identity, in this and future projects through ongoing listening and learning–a meaningfully rich, ongoing dialogue.

We acknowledge that any discussion of diversity, equity, and inclusion must be informed by other, less frequently discussed, and analyzed considerations, such as: culture and privilege, which have historically, too often, marginalized or neglected certain communities’ access and choice in healthcare and medical research. Put simply, we are committed to authentically engaging in an ongoing, meaningful dialogue from those whom we interact, but also to foster and adopt lasting changes to the lives of those of us who fall under the ever-widening umbrella known as rare disease.

Frequently Asked Questions

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