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Head of the Herd: Chandra Clark, VHL Alliance

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At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space.

Prior to joining VHL Alliance, how did you get exposure to diversity, equity and inclusion (DEI)? How do those experiences carry over to your work with the von Hippel-Lindau syndrome (VHL) community?
My passion for DEI stems from my own lived experiences. Much of my own personal journey was spent trying to find my purpose and where I “fit in.” I am part of a marginalized population and experienced a lack of access to resources, including exposure to education, but I knew I had a passion for helping people. It was during my graduate program where I fell in love with service and started becoming involved in the community. I’ve been in the nonprofit world now for 17 years. I always tell people: creating access provides opportunity. I will strive to make sure all of our organization’s efforts are related to DEI, because everyone deserves to feel safe and supported in having the tools and resources they need to live the highest quality of life.


When you think about health equity, personally and as the Executive Director of your organization, what does that look like to you?
I grew up in Louisiana, which was very segregated. My grandparents knew they would not have access to the same quality of health care as other non-marginalized populations. It was an unspoken truth. My grandmother had diabetes, and by the time she passed away, she had lost both of her limbs. I recall conversations my mom would have with her about her health care and the ways the doctors would treat her. Again, it was just understood that because she was a Black woman, she would not have high quality care. Because of these inequalities, I’ve seen many marginalized patients operate out of fear – fear to reach out for resources and fear they won’t get access to the care they need.

As Executive Director for the VHL Alliance, I have a responsibility to our current diagnosed patient community to make sure they do have access to the highest quality care, and that our team is providing them with the education and the resources in the support that they need to thrive. By the same token, we have a responsibility to the undiagnosed community to let them know we are here and to really stress the importance of continuing to seek out support, care and a diagnosis.


What do you think is the role of a rare disease patient advocacy group when it comes to contributing to a more equitable health space?
Patient advocacy groups can play a tremendous role in improving health equity and building a bridge to resources. It starts with connection. We need to create opportunities to genuinely connect with all populations, including minorities and marginalized communities. We also need to understand the power behind the language we choose when communicating to diverse groups of people. People tend to automatically assume DEI is only about race. DEI transcends race. It transcends social and economic status. If I’m inviting you to my home, I need to understand more about your lived experiences in efforts to best relate and respectfully communicate with you. Inclusivity means creating a seat at my table so that you feel safe and welcomed.

For example, practitioners and advocacy leaders shouldn’t assume a marginalized patient (whether it’s due to socioeconomic status, race, gender, orientation, etc.) doesn’t have health care. They might have access to health care, but they may not truly be able to access it in way they feel safe and comfortable receiving that health care. We need to be sensitive, understanding and individualized in our approach. We need to create opportunities for diverse communities to have a voice and advocate for their needs.


How do you envision VHL Alliance working to address these challenges?
We’re working to establish VHL Clinical Care Centers in areas of the country that have been identified as barren of the expert care patients require. We’re also educating the next generation of medical professionals about VHL, to help ensure future expertise will be more widespread across care centers. We’re working to create a formal system that will enable patients and their local doctors to tap into this expertise of established VHL practitioners and researchers.

Our organization is focusing on identifying and engaging with patients and families who have not previously been connected to the VHL community. We are revising our resources and materials to make sure they are inclusive, accessible and can be understood by everyone. We’re making efforts to meet patients where they are –both physically and virtually.  We have a very active Facebook group, and to strengthen the emotional support we offer, we have a support hotline and wellness coaching program. We’re continuing to create and tailor programming and resources to fit our patients’ unique needs.


What would you say to a marginalized patient or caregiver who is looking to become more involved in rare disease advocacy, but might be feeling like an ‘outsider’?

You matter, and your voice needs to be heard. It’s easy to sit in a space where you feel “what’s the point of me speaking up if my voice doesn’t matter?” It does. It only takes one person speaking up to bring about a whirlwind of change.


Do you have any advice for other non-profit rare disease organizations who are looking to make DEI a core component of their advocacy and programming?
Recognize that DEI isn’t a temporary goal. This is our present and this is our future, so make a firm decision to incorporate DEI into the very DNA of your organization. Do an audit of your current organization to assess the areas you may have not been successful. Acknowledging and analyzing these gaps requires humility, as does becoming comfortable with having uncomfortable conversations.

Rather than reinventing the wheel, focus on collaboration. I’m currently looking for opportunities where I can partner with other organizations that have either already been operating in this space or are moving forward to focus more intently on DEI initiatives. We will always have more of an impact when we work together.


How do you remain hopeful for 2021 and beyond for rare cancers and rare disease?     What gives me hope is the VHL patient community. It’s the conversations with our patients, caregivers and families that inspire me. When you’re dealing with circumstances beyond your control, you still have to make the decision to show up every day, and I see that in our patient community – they are some of the most educated, compassionate, strong and resilient people I’ve ever met. When you realize they’re still showing up every day, how dare I not?