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Navigating the Extraordinary: EVERSANA’s Employees Speak Out About Their “Why” this Rare Disease Day

Rare Disease Day 2024; Beyond the Diagnosis

Recognizing Rare Disease Day 2024 at EVERSANA 

As Rare Disease Day 2024 unfolds, EVERSANA stands at the forefront of a movement that transcends the ordinary. This year, the day coincides with the rare occurrence of leap day, underscoring the exceptional nature of the challenges faced by individuals dealing with rare diseases. In the spirit of elevating understanding and fostering support, EVERSANA is not only commemorating the day but actively contributing to transformative initiatives that echo its commitment to making a meaningful impact in healthcare. Join us at World Orphan Drug Congress USA to hear from EVERSANA leaders Maria Kirsch, President, Patient Services, Ramaa Nathan, PhD, Vice President, Data Science & RWE, and Chief Medical Officer Dr. Pierantonio Russo, MD, FCPP, STS as they talk about innovative work to transform the patient experience.  

A Brushstroke of Compassion: The EVERSANA and Mirum Collaboration to Sponsor a Painting for Beyond the Diagnosis to Raise Awareness for Rare Disease

Rare Disease Day 2024; Beyond the DiagnosisIn line with our commitment to raising awareness for rare diseases, EVERSANA has teamed up with Mirum, a valued partner, to support the organization Beyond the Diagnosis 

Together, we sponsored a portrait of Lexi, a young girl living with Smith-Lemli-Opitz syndrome (SLOS). Beyond the Diagnosis, known for using art to reach a broader audience, continues to showcase the power of creativity in fostering empathy and understanding for those facing rare diseases. 

Lexi’s portrait will join the impressive collection at the Beyond the Diagnosis gallery, becoming a symbol of resilience and inspiration for rare disease awareness. This is just another representation of our ongoing commitment to making the world a healthier place for all. 

Personal Connections to Rare Disease: Voices of Sy Pretorius, Mike Ryan, and Penny Remus

Rare diseases touch the lives of individuals in profound and unique ways, fostering deep personal connections that drive professionals in the healthcare industry to continuously strive for excellence. EVERSANA leaders Sy Pretorius, Mike Ryan, and Penny Remus share their personal motivations and connections to rare diseases in exclusive video clips. 

Sy Pretorius, Chief Operating Officer & President, Outsourced Solutions reflects on his experiences as both an expert in life sciences commercialization and a father to a child with a rare condition. His dual perspective illuminates the intersection of empathy and expertise, driving his unwavering commitment to ensuring that every patient receives the best possible care. 

Mike Ryan, Executive Vice President, EMEA, also the father to a rare disease child, emphasizes the importance of everyone lending a hand and their expertise to address the unique needs of the rare diseases. He shares insights into the power of partnership and the collective responsibility the healthcare industry holds in driving innovation and transforming the patient experience.

Penny Bemus, Senior Vice President, Commercial Strategy & Solutions, brings a unique patient-centric lens to the discussion. Having started in Specialty Pharmacy, she is a steadfast advocate for elevating patient voices and ensuring that their needs and experiences shape the future of healthcare.

As Rare Disease Day 2024 unfolds, we invite you to join us in acknowledging the extraordinary individuals facing rare diseases, and to recognize the collective responsibility we hold in shaping a future where health truly knows no bounds. Together, let’s make a lasting impact in the lives of those navigating the complexities of rare diseases. 

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