A Passion for Advocacy and Making A Difference

After studying history in college, Daniel found his way to working within advocacy, but the path wasn’t initially clear. Daniel attributes the support and mentorship he received growing up to leading him to his current role. He has held executive positions in three non-profit health organizations prior to joining the Horizon Therapeutics advocacy team. His focus throughout those years was on leading advocacy organizations and their fundraising efforts while also helping to grow their exposure in the community. As he fell into his roles in the non-profit health organizations it became clear to him that working within patient advocacy can provide that same impact to the community that he felt while he was younger.

For Daniel, working as a patient advocate in the rare disease community allows for the unique ability to engage with not only people living with rare diseases, but caregivers and families. Through his work, he’s gained a strong perspective and understanding of the many ways a rare disease can impact people and their families throughout different times in their lives. It’s a point of view that has helped Daniel develop a strong passion for his advocacy work in helping and supporting the rare disease community. He thinks having a passion for the rare disease community is critical to making a difference. Being an advocate goes beyond just supporting research and access to care, it’s also about advocating and supporting voices from the rare community.

People living with a rare disease can face many barriers to accessing the information and support they need. Daniel works to find opportunities to support the rare disease families and give them the resources and information that they need to make the best decisions for themselves and their families. Daniel knows firsthand how important it is to hear from families living with rare diseases to better understand and support their journeys. Having empathy is incredibly important. Working within rare means being part of a support system and listening and learning, always trying to understand. One of his favorite aspects of his role as a patient advocate is the ability to interact with so many advocacy organizations and to connect rare disease community members who are seeking and searching for information to support.

The rare disease community is resilient and inspires Daniel every day. He recalls one story that stays with him and fuels his passion to work harder for all families impacted by rare disease. He was connected with a family who had lost their son to complications from Blau Syndrome. At an event to honor his memory, he learned so much more about the many hurdles his family had to overcome from dealing with symptoms to the many barriers to adequate care at school and navigating finding a specialist. In diseases that are so rare, finding a specialist, a dedicated community and resources is a difficult journey. Daniel hopes to make a difference and help share stories and voices from the rare disease community to ensure that no one ever feels alone.