Building a Stronger Community Through Patient Advocacy

I’ve always had a great passion for helping others and knew that I wanted to pursue a career with impact. While I was a student at Lake Forest College, I played on the softball team, and often, we were encouraged to volunteer and give back to the community. During that time, I was introduced to Friends of Jaclyn; a non-profit organization focused on improving the lives of children battling pediatric brain tumors, and other pediatric cancers, by pairing them with local teams and clubs.

My team was fortunate enough to be paired with Mia, a sweet and spunky girl from the Chicagoland area, who never failed to put a smile on your face. We formed a strong, and very special, relationship with her and always found ways to include her in events and activities – in a way, she became part of our softball family. Sadly, Mia passed away my senior year. Although Mia isn’t with us anymore, that experience taught me so much about advocacy and my softball team continues to honor her life every year through grassroots efforts. Just a short time later, when I began an internship at Horizon, I got a glimpse into the incredibly impactful work that industry and patient advocacy groups can have on the patient community and their families. My personal experiences, passion to build relationships, and helping others became the driving force behind pursuing a role in patient advocacy.

In this new role, I found myself always volunteering at local events and conferences. I was hungry and eager to learn more about the important role patient advocacy plays in the healthcare industry. One of my volunteering opportunities for Horizon even pushed me to new limits. A rare father of a boy who had Cystinosis, a rare disease caused by an abnormal buildup of a certain amino acid called cystine, came to us and told us about a fundraising walk for the Cystinosis community. He went on to tell us that he walked for nearly 24 straight hours to raise funds and to elevate awareness for his son and others who are impacted by this disease. His passion inspired us, and we knew we had to get involved. We quickly rallied our colleagues and flew to the east coast to join him by participating in the 57-mile walk, raising awareness for his son and the cystinosis community.

Upon arrival, after seeing the outpour of supporters and participants, we knew participating in this walk was something special. We walked around the high school track for 57 miles, 24 hours straight, overnight, and through the rain. It was an eye-opening opportunity to get to know all the community members and to allow the people in the town to learn about the challenges that come with a rare disease. In return, it gave us new perspectives from listening and learning. It was an experience unlike any other, without any hesitation, I would do it again.

My favorite part of working within the rare disease community is having the opportunity to work in such an intimate and personal atmosphere. Rare diseases can affect every stage of someone’s life, and to be part of their journey, in any sort of capacity, helps me to learn and understand what the needs of the community are. It allows me to provide innovative solutions and programs that can assist them through different stages of their life. Building these relationships is a crucial part of advocacy and getting to know the community on a personal level allows me to help where I can.

My role at Horizon enables me to work across multiple spaces within advocacy, providing impactful solutions to the rare disease community, and for that, I am forever grateful to have a hand in providing that help. Horizon gives me the creative freedom to find new ways to engage patients, caregivers and advocacy groups to bring forth new ideas. Working within the rare disease community and building these relationships can help elevate the overall patient experience.

As professional advocacy evolves, I hope people learn more and come to understand the importance behind the role of an advocate. You are the connector between key stakeholders in rare disease and are often tasked with providing solutions to the unmet needs of the community. As an advocate, if you hear one person has a challenge, more people are likely facing similar obstacles, the steps you take to implement a solution can significantly assist the lives of those impacted. It’s necessary to show up, listen, learn, do the research, and go the extra mile to help where and when you can compliantly.

1 in 10 people have a rare disease – it could be anyone in your life, a family member, a neighbor, a co-worker, or a friend. By rallying a broader community to support the rare disease community, we can create a greater impact and I hope to continue inspiring others to rally around rare. The rare disease space is truly unlike any other space I have seen or worked in, affecting people’s everyday lives. The more support and awareness we can bring to help, the better the community will be.