RARE Daily

How One Rare Disease Nonprofit is Striving to Advance Diversity, Equity, and Inclusion

September 15, 2020

My son Micah spent months in the intensive care unit. During his hospitalization, I learned what it means to be vulnerable, isolated, and powerless. It took me nearly Micah’s entire 11-month life to learn how to effectively advocate for myself and my son. By the time Micah took his last breath, I had found strength and courage that I did not know was possible.

I had to re-learn how to live without Micah in my arms. Founding and building the Necrotizing Enterocolitis (NEC) Society helped me do so. The NEC Society is a nonprofit organization dedicated to building a world without necrotizing enterocolitis (NEC), a rare and devastating intestinal disease that primarily affects premature and medically fragile infants in their first weeks and months of life. The NEC Society brings together patient-families who have been affected by the disease along with clinicians, scientists, and other stakeholders who are committed to our mission. We received support from the Patient-Centered Outcomes Research Institute early on in our work and we hosted the first NEC conference in North America in 2017.

The first NEC Symposium was successful in terms of exposure and content, and yet I realized I had made a terrible mistake. I thought that simply valuing diversity and inclusion was enough. It was not. All of our patient-families in attendance were white and there was little diversity in the rest of our conference participants as well. From then on I vowed to be intentional and actively seek diverse perspectives in all of the NEC Society’s endeavors.

Since 2017, we’ve worked to diversify our events, board, and community. This is a constant, conscious process and we have committed ourselves to learning and improving, while using our Inclusivity Policy as our guide. It is critical to intentionally amplify the voices and needs of women, diverse groups, and individuals with rare or unique experiences. Not only is it the right thing to do, but many of these groups are disproportionately affected by rare diseases like NEC due to systemic racism and unconscious bias. By uplifting these voices, we advance our shared vision of building a world without NEC.

Patient-families in the rare disease community know how it feels to be ostracized, disempowered, and isolated. Our personal experience with rare disease has demonstrated the importance of feeling valued, being heard, and having equitable access to opportunities and the ability to effect change. Rare disease nonprofits can serve as leaders in actualizing diversity, equity, and inclusion in our organizations and communities.

I’ve been asked how the NEC Society strives towards our values of equity and inclusivity. Here are five things that have worked well for us:

  1. Integrate diversity, equity, and inclusion into all organizational processes. It cannot work if it feels additional instead of integral. This includes social media, marketing, hiring, and messaging.

  2. Diversify the organization in all areas—leadership, advisory boards, employees, contractors, and work with patient-families; this requires us to actively seek out new networks and constantly strive to do better.

  3. Be transparent about our diversity, equity, and inclusion values and get comfortable speaking out and up.

  4. Invest in opportunities that increase equitable access to resources, as well as prevention and treatment options for our at-risk population.

  5. Be prepared for critical feedback – accept feedback that will help us grow and ignore feedback from those who do not share our basic human values.

As leaders in the rare disease community, it is a responsibility to harness our influence to serve as active allies to vulnerable communities. We serve our own rare disease patient populations by taking an inclusive approach. This approach is fundamental to who we are as rare disease nonprofit organizations. Diversity, equity, and inclusion allows us to see—and begin to address—some of the deep-rooted problems in our organizations and communities that we are otherwise unlikely to recognize as problematic. While none of us have all the answers, an authentic commitment to diversity, equity, and inclusion will help all of us advance.

The work of diversity, equity, and inclusion is never complete. It is a continual process. The rare disease community knows this long journey of incremental progress, and we can lead by constantly looking for opportunities to learn, improve, and evolve together.

Jennifer Canvasser is founder and director of the NEC Society



Stay Connected

Sign up for updates straight to your inbox.