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Debi Crist of Rare Patient Voice

Debi Crist’s role at Rare Patient Voice came from a need to make a difference, born out of her personal experience as a caregiver to her son. She talks to RARE Revolution about just some of the projects her organisation is involved in, how she reaches out to patients, and about the sense of empowerment her role gives her

PEO series: meeting the beating hearts behind the rare brands


How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future?  

We have been engaging with patients from the start at Rare Patient Voice. We began by attending patient healthcare events such as conferences, walks, and symposia. Through our network of 50+ patient advocates, we were able to attend hundreds of events a year. At the same time, we knew that we could not reach all of the patients we wanted to by attending these events, so we began to engage patients online as well. I began connecting with online support group admins, advocacy groups, and smaller non-profits. It allowed us to reach patients and caregivers on a larger scale. Now that we are in the world of COVID-19, in-person events haven’t been an option, so the online engagement has become essential for our business. In the future, I hope to build a Team of Outreach Specialists to help reach even more patients and caregivers. 

Debi Crist of Rare Patient Voice


What does a typical week entail for you, and are there any specific projects you can tell us about?

When we have a project that needs additional participants, that’s where I come in. I reach out to current connections I’ve made with support group leaders, advocacy groups, and foundations. Each one has a different way of reaching their community members and I help them come up with a game plan to reach as many patients and caregivers as possible. This also gives me an opportunity to find new connections and build our growing partnerships.

In a typical week, I may reach out to 50 of our patient advocacy and support groups and recruit hundreds of patients to participate in research. For a recent project, I was tasked with finding patients with Breast Cancer to participate in a 20 minute online survey and compensation was $50. I contacted 12 groups and created advertisements to get the word out about this study. By the end of the week, I had identified 151 patients and the study was a success!


What were your personal motivations to taking up a role in patient engagement? 

My son has Crohn’s Disease and I joined Rare Patient Voice as a caregiver so I could contribute my voice to research. I was hired as a patient advocate and attended the in-person events. I enjoyed sharing my voice and my experiences as a caregiver directly with the companies who are creating new products, treatments, and resources. It’s incredibly empowering and I felt that I was actually making a difference. 

As a Mother, I am a fixer. I couldn’t fix this devastating diagnosis for my child. I felt so helpless. Rare Patient Voice empowered me and gave me a voice. Even though I could not fix or cure my child’s condition, I could be a part of the big picture and felt I was actually making a difference.


What makes the role of patient engagement officer important to your organisation?

This role is one of the most important parts of our business. Without the patients and caregivers, we wouldn’t be able to do the research and meet our client’s needs. There is nothing more important to our organisation and everything we do is focused on our patients. 


In your role, how do you ensure the patient voice remains central?

Patients are the heart of Rare Patient Voice and by constantly connecting with new support and advocacy groups I help patients to share their expertise! The more patient groups I connect with gives patients opportunities to share their experiences and contribute to new products and services.  


How do you reconcile operational business needs with elevating the patient voice?

Since our business is focused on patients, all operational business needs revolve around finding patients and connecting them with research opportunities.  


What are the most rewarding aspects of your role?

Empowering patients and caregivers. Giving them a voice is truly the most rewarding thing I have ever done.


What is your proudest moment in your career thus far?

We have created a referral program. Although anyone qualifies to participate in our referral program, it’s been amazing to help increase donations to these smaller ‘mom and pop’ advocacy groups and non-profits. They don’t have the reach and support that larger foundations have for fundraising. We enable them to offer their community the opportunity to have a voice, participate in research that directly affects their conditions all while getting paid $100 per hour. For every person that joins Rare Patient Voice through their group or organisation, we donate $5 to the organisation. It can add up quickly! It’s been a wonderful fundraising opportunity with little effort and no cost at their end. When I started at Rare Patient Voice, we had four referral partners and we now have over 800. This is most definitely my greatest achievement in this role to date. 


What advice would you give someone considering working in the rare disease space?

You must be passionate about giving patients and caregivers a voice and a home. When you are Rare and even non-Rare, it can be difficult to find your people, your home, and a safe and understanding place. Working in this space is an honour and a privilege, and it is essential that you are dedicated to making a difference for this community.


If you weren’t Patient Engagement Officer of Rare Patient Voice, what was Plan B?  What did your 10-year-old self want to do as a job?

I majored in business but put my career on hold to raise my two children. I always planned on getting back to the workforce, but life had a different plan. My son was diagnosed with Crohn’s Disease at age nine. My world revolved around managing his medical needs and getting him into remission. If my path were different, I could see myself in a business development role having something to do with real estate. 

Debi Crist of Rare Patient Voice

​To find out more about the work of Rare Patient Voice please visit;

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