Hereditary angioedema (HAE) is a debilitating and potentially life threatening rare disease, one that Chaeli Wallace, senior manager of patient marketing and education at Takeda, is intimately familiar with as someone with this condition.

Chaeli is an integral part of Takeda’s HAE Patient Community and Education Team, which is dedicated to providing educational resources aimed at empowering patients with HAE and their families on their journey. In her role, Chaeli helps shape efforts to expand access, make connections, and create tangible differences in the lives of patients. 

Living with HAE: a personal perspective

HAE can be particularly demanding as it often involves managing unexpected and painful swelling episodes. Chaeli’s personal experience with HAE has given her unique insights into the challenges faced by individuals living with this rare disease. One of the most significant challenges is that HAE is not always visible to others. This helps guide her leadership and offers a critical perspective in valuing and uplifting the experiences of the patient community. 

Chaeli also recognizes that everyone’s journey with HAE is unique, which allows her to think beyond her own lived experiences and focus on the needs of others. Her role revolves around connecting with the broader HAE community and working towards educational solutions that aim to benefit all individuals affected by this condition. It is a challenging but immensely rewarding endeavor that has a real impact on those living with HAE and their caregivers.

Takeda’s dedication to helping people with rare diseases has been a cornerstone to their operational model for decades, leading with a robust portfolio of treatments, comprehensive patient support programs, as well as relentlessly advocating for wider awareness and understanding of the impact of delayed diagnosis of rare diseases. Takeda’s patient, trust, reputation, and business values are deeply woven into Chaeli’s work, ensuring that patient-centric thinking, trust, reputation, and business goals aligned with improving the patient experience remain at the forefront of her priorities.

For Chaeli, the most meaningful aspect of working with her colleagues in the U.S. rare disease business unit is witnessing the profound impact of their work on patients’ lives. Being part of a team that addresses not only HAE educational needs but also recognizes patients’ overall well-being is incredibly rewarding. Chaeli’s personal journey with HAE has been transformative, and she combines her personal and professional experiences to create solutions to help align the goals of Takeda with that of the larger HAE community. 

Importance of understanding and empathy

A priority for Chaeli that she encourages in others who support the HAE community is to think outside the box, prioritize patient-centered approaches, listen to the community’s needs, and remain open to continuous learning. Rare diseases are constantly evolving, and staying informed and empathetic is crucial. She also emphasizes the importance of understanding the unpredictability and emotional toll of living with a rare disease like HAE. It encompasses not only physical symptoms but also psychological impacts, the need for constant vigilance, which makes having a supportive community so important.

A reminder of determination and resilience

Chaeli acknowledges the challenges of dealing with a rare disease, where answers are often elusive. It takes determination and resilience to navigate through uncharted territories. In times of adversity, she draws inspiration from others with HAE facing the same obstacles as her. As the HAE treatment landscape becomes increasingly complex, Chaeli remains committed to pushing forward educational tools and resources to help others living with HAE navigate their options. 

Chaeli will be representing Takeda and her HAE experience at the MassBIO 2024 Rare Disease Day When Patients Become Leaders panel on February 29, 2024, highlighting her unwavering dedication to empowering the broader rare disease community. Her personal experience and role at Takeda allow her to make a genuine difference in the lives of individuals affected by HAE and other rare conditions, exemplifying the values of Takeda and inspiring others to strive for more.

Takeda’s recent efforts in rare diseases

Takeda has recently published a white paper created in partnership with NORD, which delves into policy opportunities and makes recommendations for how leveraging such opportunities may reduce diagnostic barriers and advance health equity for the diverse group of individuals living with rare diseases. Our aim is to positively impact the path to diagnosis for the rare community and more broadly, we are equally committed to addressing health inequities that we believe could have an impact on all patients. Learn more by visiting Takeda’s website.