Sue Krug, patient engagement officer of Soft Bones, knows all too well the fear that can come with a rare disease diagnosis. In her role she draws on her own lived experience with rare disease to help alleviate the fears of patients and their families and supports them throughout their rare disease journey, empowering them with knowledge and information 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?
The patient engagement role has been part of the fibre of Soft Bones since it was founded more than 10 years ago. My role started as a friendly welcoming face to hypophosphatasia (HPP) for newly diagnosed and joining members. Now it has evolved to helping patients and families learn about the huge spectrum of symptoms of HPP and connecting them with other staff at Soft Bones and our various resources.
What does a typical week entail for you, and are there any specific projects you can tell us about?
There is no ‘typical’ week at Soft Bones, which is what I love about my job. One week, I may have a long conversation with a newly diagnosed patient who has been searching many years for an answer to all their symptoms that did not seem to connect until now. Then another day, I may help a scared parent understand what this diagnosis could mean for their unborn child. Throughout the variety of patient engagements, one constant is my role of calming their fears and helping them to know they are not alone in their journey.
What were your personal motivations to taking up a role in patient engagement?
I’m motivated to help patients from feeling lost and alone. Having a rare disease (hypophosphatasia) myself, I understand their fears about feeling like the only one in the world with a condition. My motivation to stay in this role is seeing patients grow in confidence and knowledge of their rare disease, and learning to self-advocate for themselves with their doctors.
What makes the role of patient engagement officer important to your organisation?
One of the most important roles of any patient advocacy organisation is to empower patients with information to allow them to advocate for themselves. At Soft Bones, we aren’t just here at the point of diagnosis, but we partner with patients along their entire journeys.
In your role, how do you ensure the patient voice remains central?
By being a good listener, showing patience, and engaging in conversation. Since our HPP patients have a variety of needs, we have created eight regions in the U.S. that allow us to connect on a local level to provide more in-person opportunities to connect. Soft Bones is a nimble organisation and this flexibility allows us to re-prioritise as needed to ensure we continually provide value to our patients.
How do you reconcile operational business needs with elevating the patient voice?
Our approach has always been to elevate the patient voice first order of business, and we find that if you put the patient first, the operations side always seems to fall into place.
What are the most rewarding aspects of your role?
The most rewarding aspect of my role is when I see a patient, who a few months ago was filled with fear and searching for answers, transformed into an active member of the HPP community. It’s especially rewarding when I see a patient ‘paying it forward’ with knowledge that we gave them, and seeing them armed with new information and confidence where they are able to help out someone else in our community.
What is your proudest moment in your career thus far?
It is not uncommon in my role to have situations where severe newborns can be in a life-threatening state where every minute counts. Seeing a severe newborn turn the corner and thrive because our Soft Bones team helped them to quickly connect, get a diagnosis and access to treatment is an incredible feeling. What can be better than that?!
What advice would you give someone considering working in the rare disease space?
A few pieces of advice I would offer to someone working in rare: first, take nothing personally. Emotions can run high as patients often feel misunderstood or have had doctors think they are faking symptoms because they haven’t been able to find a cause.
Another insight, the rare disease community is very personal and we connect by sharing experiences. So, willingness to share experiences—or to connect in some way that is similar—is very important. Compassion and empathy, even if you have never been in their shoes, is important. We are very close with each other. Because we are small, I know almost every member of our community, and since I have developed relationships, many times I work at odd hours because I feel the need to be there for them. But even with this challenge, working with the rare community is extremely rewarding as long as you make time for self-care.
If you weren’t Patient Engagement Officer of Soft Bones, what was Plan B? What did your 10-year-old self want to do as a job?
If I wasn’t working at Soft Bones, my Plan B was to teach computer software to seniors. I still do this as a hobby. When I was 10 years old, I wanted to be a forest ranger and smoke jumper. In many ways, I’m navigating the wild frontier of rare diseases and putting out fires every day, so I have no regrets.