Diversity, Equity, and Inclusion

Our Commitment to Diversity, Equity and Inclusion

As a global nonprofit organization dedicated to finding better treatments and a cure for Fanconi anemia (FA) and providing education and support services to all affected by FA, the Fanconi Anemia Research Fund (FARF) is dedicated to building a more equitable and inclusive space for every person in the FA community. Our organization works with and serves a diverse population, including individuals affected by FA, caregivers, family members, researchers, clinicians, fundraisers, donors, staff, and volunteers. In addition, FARF interfaces with other organizations in the research, cancer, rare disease, and patient advocacy spaces.

We recognize the history of oppression in our institutions and society – including healthcare and research – that results in ongoing disparities for many. While we recognize the limitations of a small, rare disease nonprofit in resolving these large systemic issues, we embrace the opportunity to create positive change within our organization and the FA community. We believe that organizations of any size that engage diverse perspectives and evolve to be more inclusive and equitable will have a positive effect on society.

For those reasons, FARF is committed to improving our organization by acknowledging our biases and operationalizing our values.

  • We commit to building and nurturing a diverse, inclusive, and equitable environment in which every person in the FA community feels respected and valued regardless of race, gender, age, ethnicity, national origin, sexual orientation, ableness, or religious identity.
  • We commit to being nondiscriminatory and providing equal opportunities for employment, volunteering, and advancement in all areas of our work.
  • We commit to recognizing and addressing inequities in our policies, programs, and services.
  • We commit to updating and documenting our progress on diversity, equity, and inclusion practices.

The Fanconi Anemia Research Fund agrees to implement the following action items to promote diversity, equity and inclusion in our work:

Organizational

  • Create a DEI committee comprised of staff and board members
  • Develop policy to reflect an organizational commitment to diversity, equity, inclusion
  • Recruit leadership (boards and committees) that represent previously underrepresented groups
  • Incentivize professional development for staff members that addresses DEI (ex. learning Spanish, attending trainings); build into employee review process
  • Update staff job descriptions and requirements to reflect DEI policy

Mission programs

  • Continue to translate educational materials into Spanish, including Spanish subtitles on videos
  • Update and simplify the Family Services enrollment form to include more accurate and inclusive demographic information
  • Create Family Advisory Committee to ensure programming is accessible and meets the needs of the community
  • Launch the Postmarked with Love program to reach folks who are not very connected to FARF, to allow all stakeholders to participate, and to increase awareness of FA
  • Encourage community members to ask state leadership to declare May FA awareness month
  • Expand caregiver support packages to international caregivers
  • Develop Global Resource Map of FA expertise on the FARF website
  • Support and direct early detection brush biopsy project expansion
  • Develop Fanconi Anemia Cancer Consortium North America in 2022 with intent to grow internationally in subsequent years
  • Inform and steward graduate students, postdoctoral scholars, and new investigators to become more involved in the FA research community
  • Continue to fund international research grants
  • Support global initiatives via the International FA Support Grant Program

Events and communications

  • Add virtual component to in-person events (via video streaming or recordings)
  • Offer Spanish-speaking interpreters at virtual events and at in-person events when possible
  • Simplify travel scholarship applications and remove identifying information from applications for blind review by scholarship committee to ensure equity
  • Translate scholarship materials into Spanish
  • Market scholarship opportunities more broadly
  • Create and share more visual content such as video and infographics
  • Increase social media engagement and reach by using targeted ads
  • Expand communications to audiences with specific situations, starting with international patients/families and bereaved families
  • Increase storytelling from varied audiences (ex. siblings, grandparents, chosen family)
  • Include an option for self-identified pronouns in all event registrations
  • Use non-gendered pronouns in FARF communications where appropriate
  • Partner with international FA organizations to publish materials in other languages and through the cultural lens in that country

Approved by the FARF Board of Directors on February 24, 2022.