Global Rare Paediatric Disease Network

A community for IHF members working in rare paediatric disease to share experiences and best practices to improve the services provided to children and their families around the globe.

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

Rare Disease Day 2024

Across our network on 29 February 2024, Rare Disease Day, we promoted international collaboration to improve service delivery for rare paediatric diseases. 70% of rare diseases start in childhood. Through exchanging experiences and good practices in diagnosis, treatment, and care provision, we can improve hospital services for these young patients, their families, and the health and care workers supporting them.

Hear from our Global Organizing Committee

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

Global Rare Paediatric Disease Network at the World Hospital Congress

Members of the organizing committee held a discussion session at the World Hospital Congress in Lisbon. Key takeaways included the need for collaboration over competition; increased awareness and visibility of rare diseases; increased access to lifelong multidisciplinary care and support for patients and their families; improved diagnostic, management and treatment guidelines and pathways; and increased data and research. Listen to the session again at the link below.

Listen again to the GRPDN session in Lisbon

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-Joershas served as President and CEO at Gillette Childrens SpecialtyHealthcare in Minnesota, USA since 2013. As the USAs first hospital dedicated to serving children who havedisabilities, Gillette Childrens provides subspecialized care to children who havecomplex, rare or traumatic conditions affecting the performance of an individuals musculoskeletal and neurological systems.

With morethan25 years ofhealthcare 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 Childrens 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 Legeslative Assistant on health policy. She also conducted research and led advocacy efforts at The Pew Charitable Trusts 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?

  • Who can join the Global Rare Paediatric Disease Network?

    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.

  • 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.

  • 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.