Anyone from an IHF member organization can join the network. It will be of most interest to those managing paediatric hospitals or paediatric disease units, as well as those managing hospitals with a rare disease focus. Please note that the network focuses on management, administrative and leadership topics associated with paediatric rare disease rather than a clinical focus.
Global Rare Paediatric Disease Network
The GRPDN ran successfully for three years as a community for IHF members working to support children with rare diseases and their families. Having fulfilled the group's objectives, we decided to sunset the group in June 2025. Our thanks to the IHF members who served on the Steering Committee to stimulate discussion and share learning across the world.
Creating a community of hospital leaders working in administration and leadership for rare paediatric disease.
Leaders managing rare paediatric disease face many challenges, with patients and their families often needing life-long multidisciplinary interventions and support in highly complex cases. Hospitals may only see certain cases very rarely, making collaboration essential.
The network is a community for knowledge exchange and support. Network members exchange and share challenges and successes through a series of virtual and in-person events throughout the year.
Purpose
To provide a supportive learning environment for IHF Members operating paediatric institutions caring for patients with rare diseases to share ideas, discuss opportunities and challenges, and implement potential solutions. It is not our intention to reproduce existing rare disease networks, which seek to share clinical information.
Build a community
Create a supportive and confidential learning environment
Share resources and best practices
Highlights
GRPDN lunch session at Congress: Pathways to better care in paediatric rare diseases
On 12 November, the IHF Global Rare Paediatric Disease Network (GRPDN) and Rare Diseases International will host a session on "Bridging the gaps: Pathways to better care in paediatric rare diseases".
During this session, participants will gain insights into building collaborations to strengthen systems’ responses to rare diseases, and advocating for the rights of children living with rare diseases and their families.
A significant milestone for the WHA resolution on Rare Diseases
Members of the IHF GRPDN were thrilled that the 156th WHO Executive Board recommended the adoption of the Resolution on Rare Diseases to the 78th World Health Assembly (WHA) in May 2025. This marks a significant milestone in the global effort to improve the lives of over 300 million persons living with a rare disease (PLWRD) worldwide. The IHF is proud to have been in the coalition of partners supporting this resolution.
We look forward to hearing more about the progress on this resolution from the CEO of Rare Diseases International at the World Hospital Congress.
Read more
Hospital leaders can improve care for the rare disease community
More than 400 million people worldwide are estimated to live with a rare disease, and over half of these are children. The IHF’s Global Rare Paediatric Disease Network (GRPDN), led by IHF member Gillette Children’s Specialty Hospital, published the findings of a survey showing the important role of hospital administrators in providing high quality care to children with RD and their families. The GRPDN works to improve the management of rare diseases by hospital leadership and is open to any IHF member with an interest in this area.
Read the research findings
The GRPDN at the World Hospital Congress 2024, Rio de Janeiro
A networking lunch hosted by the GRPDN Steering Committee attracted hospital leaders managing paediatric hospitals from around the globe to share thoughts and exchange ideas on how to improve collaboration between institutions working in this area. It was clear that working collectively is vital in solving the challenges raised, as doing it alone is ineffective when it comes to working with such a vulnerable population.
AI and the management of rare paediatric disease
In this engaging podcast, Barbara Walczyk-Joers, President and CEO at Gillette Children's Specialty Health Care, sat down with Professor Ee Shien Tan, Head of Clinical Genetics, Women's and Children's Hospital in Singapore and Heini Kanervo, Rare Diseases Coordinator at University Hospital Brussels.
They discussed the challenges and opportunities for the adoption of AI in all aspects of hospital management. What are the specific considerations when it comes to rare paediatric disease?
Tune in to the podcast
Introduction to the GRPDN by Barbara Walczyk-Joers, CEO and President of Gillette Children's Specialty Healthcare
Words of welcome, from the co-chair of the IHF's Global Rare Paediatric Disease Network.
Get to know the network
Members of the Global Organizing Committee
Governed by an Organizing Committee, the Global Rare Paediatric Disease Network is accountable to the International Hospital Federation Governing Council and is responsible for reporting to the IHF Secretariat.
Gillette Children’s Specialty Healthcare, USA
Barbara Walczyk-Joers
President and Chief Executive Officer
Ms Walczyk-Joers has served as President and CEO at Gillette Children’s Specialty Healthcare in Minnesota, USA since 2013. As the USA’s first hospital dedicated to serving children...
Gillette Children’s Specialty Healthcare, USA
Barbara Walczyk-Joers
President and Chief Executive Officer
Ms Walczyk-Joers has served as President and CEO at Gillette Children’s Specialty Healthcare in Minnesota, USA since 2013. As the USA’s first hospital dedicated to serving children who have disabilities, Gillette Children’s provides subspecialized care to children who have complex, rare or traumatic conditions affecting the performance of an individual’s musculoskeletal and neurological systems.
With more than 25 years of healthcare experience, Ms Walczyk-Joers has a focus on strategic performance and change management as well as health policy and advocacy. She has served in executive roles in a variety of pediatric and adult healthcare settings, including academic healthcare centres, community health systems, and independent children’s hospitals. Earlier in her career she also served at a professional services firm.
A recognized thought leader in healthcare, Ms Walczyk-Joers serves as the Chair of the Board of Directors of Children’s Miracle Network Hospitals. She is also a member of the Board of Directors of the Medical Alley Association and the Quality and Safety Committee of the Board of the Children’s Hospital Association. Ms Walczyk-Joers is an active participant in other organizations including the American Hospital Association and the Minnesota Rare Disease Advisory Council.
Ms Walczyk-Joers studied acute care hospital management at Marymount University and holds a Master’s in Health Services Management and Policy from George Washington University.
Gillette Children's Specialty Healthcare
Andrea Stoesz
Director of External Affairs
Andrea is Director of External Affairs at Gillette Children’s Specialty Healthcare in Minnesota, USA. In this role, she oversees the organization’s federal and local government...
Gillette Children's Specialty Healthcare
Andrea Stoesz
Director of External Affairs
Andrea is Director of External Affairs at Gillette Children's Specialty Healthcare in Minnesota, USA. In this role, she oversees the organization's federal and local government relations and community affairs. Andrea also serves as Chief of Staff to Gillette's President and CEO. Prior to her work at Gillette, Andrea served in the US Senate as a Legislative Assistant on health policy. She also conducted research and led advocacy efforts at The Pew Charitable Trust related to antibiotic resistance and antibiotic use in hospital settings.
Andrea graduated from New York University with a Bachelors in Political Science, and the University of Minnesota with a Masters in Public Health.
University hospital Brussels, Belgium
Heini Kanervo
Rare Diseases Coordinator
Heini is a Registered Nurse with a Masters degree in nursing and midwifery. She currently works at the University Hospital of Brussels as the coordinator...
University hospital Brussels, Belgium
Heini Kanervo
Rare Diseases Coordinator
Heini is a Registered Nurse with a Masters degree in nursing and midwifery. She currently works at the University Hospital of Brussels as the coordinator of the Reference Centre for Rare Diseases. She aims to increase rare disease awareness and improve quality of care for people with a rare disease through clinical care, research, and education. Her previous work experience includes cancer research coordination and nursing care in paediatric oncology neurology. At age 18, she was diagnosed with Lupus, a rare autoimmune disease.
University Hospital Brussels, Belgium
Vera Vertessen
Director of Nursing, Midwifery and Paramedical Care
Vera obtained her bachelor’s degree in Nursing at the Karel De Grote Hogeschool Antwerp, followed by a Master’s degree in Hospital Sciences at the University...
University Hospital Brussels, Belgium
Vera Vertessen
Director of Nursing, Midwifery and Paramedical Care
Vera obtained her bachelor's degree in Nursing at the Karel De Grote Hogeschool Antwerp, followed by a Master's degree in Hospital Sciences at the University Of Brussels (VUB) and a postgraduate qualification in Diabetes education.
Vera started her career at UZ Brussels (University Hospital Brussels) in 2005 in the Abdominal Surgery department and worked for several years as transplant coordinator. She was a member of the Belgian Transplantation Society, and took part in several projects around kidney transplantation.
In 2014 she founded together with an endocrinologist a Diabetes and Endocrinology Clinic at AZ Jan Portaels Hospital in Vilvoorde. She also joined the management of the hospital and managed a group of 300 healthcare workers.
After 7 years working at Jan Portaels Hospital, Vera returned to UZ Brussels in 2021, as coordinator of Rare Diseases. In 2022 she became Head of the Nursing Department and in 2023 Director of Patient care, leading the Nursing and Midwifery department and the Para-medical healthcare workers.
She is part of the UZ Brussel executive committee.
FAQ
Have more questions?
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Who can join the Global Rare Paediatric Disease Network?
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When does the network meet?
The network has quarterly virtual meetings. We also have an in-person meeting at the World Hospital Congress each year. Subscribe to the IHF newsletter to find out about upcoming events.
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Who should I contact for more information?
If you would like more information about the network or would like to find out how to join, please contact Ilona at ilona.johnston@ihf-fih.org.