Gillette’s Global Partnership Advances Care for Rare Disease

Over 400 million people worldwide are estimated to live with a rare disease, and over half of those living with a rare disease are children. Gillette Children's has partnered with the International Hospital Federation (IHF) to form the Global Rare Paediatric Disease Network (GRPDN), a groundbreaking initiative aimed at improving care for children with rare diseases worldwide. 

The GRPDN brings together leaders from healthcare institutions to exchange ideas and knowledge on the administrative and leadership aspects of caring for children living with a rare disease. Barbara Joers, President and CEO, and Andrea Stoesz, Director of External Affairs at Gillette Children’s, help lead the group, which includes hospitals from Africa, the Middle East, Southeast Asia, Canada, the United States, Europe, South America, and Central America. Network members exchange knowledge and share challenges and successes through a series of virtual and in-person events throughout the year. 

Individual hospitals may only see certain conditions very rarely, making international collaboration between hospital leaders working in administration and leadership for rare pediatric diseases essential. Gillette, known worldwide for its expertise in caring for children diagnosed with rare diseases, is exceptionally qualified to lead this effort. Approximately one in five Gillette patients live with a diagnosed rare disease, making conditions that may be seen infrequently at other hospitals more common at Gillette. Patients are drawn to Gillette for this depth of clinical expertise in rare diseases, and clinicians benefit from the discoveries shared through Gillette’s research.

“We are so lucky to have incredible clinical and research expertise at Gillette,” notes Stoesz. “While we are unique in our care model and the patients, we serve we can still benefit greatly through knowledge exchange and shared learning with our colleagues around the world.”  

The formation of GRPDN is a significant step towards ensuring that children living with a rare disease receive high-quality care regardless of their location. With that aim, the group surveyed hospital administrators for their perspectives on the efforts needed to improve global rare disease care. The resulting study, “Hospital Administrators as Forgotten Partners in Rare Disease Care: A Call to Action by the International Hospital Federation’s Global Rare Pediatric Disease Network,” was published in the Orphanet Journal of Rare Diseases.

The study identified five key themes: increased public awareness of rare diseases and support for families, diagnostic management and treatment guidelines, lifelong, multidisciplinary care, data and research, and funding. As the group continues to work to address these needs, Stoesz is confident that Gillette will continue to be a global leader in advocacy and care: “I think we have the best clinical teams here at Gillette; the incredible work that they do makes our advocacy work so much easier. When it comes to rare disease, we’ll continue to be leaders in this space.”