Public Affairs Committee

General Information

The ESPGHAN Public Affairs Committee (PAC) coordinates the relations between ESPGHAN and public structures, international agencies, scientific societies and any other stakeholder operating within the sector. 

Function and Purpose: Raising awareness among the public and relevant organisations of issues and challenges in the area of PGHN, in particular on child health, clinical practice and research. We facilitate this by interacting with:

  • Medical and health journalists and international media outlets
  • The European Commission, European Parliament and EU agencies
  • International agencies and organisations operating in the healthcare space e.g. WHO, CODEX ALIMENTARIUS
  • Patient Associations and other professional and scientific organisations

Projects & Activities: to view all recent activities by the PAC, you can download the annual committee report here.

Initiatives

Awareness Day Initiatives

Big Yellow Friday 2020

On the 6th March 2020, ESPGHAN joined forces with the Children’s Liver Disease Foundation (CLDF) to launch Big Yellow Friday on the European stage for the very first time, aiming to help drive pan-European awareness and understanding of liver disease in children. ESPGHAN called on policymakers to work closely with national societies and patient organisations to help ensure childhood liver diseases are better understood, prevented and treated effectively, ensuring that infants, children and adolescents can live the best possible life.

Prevalence of childhood liver disease is on the rise and now thought to affect up to 1 in 10 children across Europe. Despite this, public awareness is very low and as a result, is often diagnosed late. This can lead to health complications in patients and misunderstandings about what childhood liver disease is.

To combat these challenges, ESPGHAN presented 4 calls to action for policy makers:

  • Public awareness and education campaigns should be implemented to improve public understanding of childhood liver disease
     
  • Utilising available funds and grants for rare disease initiatives, greater research should be commissioned to help drive the development of treatments for rare liver conditions
     
  • Children with a liver disease must receive care in a specialist paediatric setting to ensure patients are diagnosed and treated in the most effective way
     
  • Long-term and gradual transitional arrangements from paediatric to adult care must be improved to ensure patients receive the highest quality of care, with as little disruption possible

To download our infographics related to this initiative, please click here. For the Manifesto, please click here. 

Together we can help improve the lives of children. 

World IBD Day 2019

For World IBD Day 2019, ESPGHAN put the hidden costs of Inflammatory Bowel Diseases (IBD) in the spotlight. With a societal cost (68% of the total cost) more than twice that of direct healthcare costs there is an industry-wide consensus to show greater recognition of the wider impact of IBD. Evidence has shown IBD has resulted in lost productivity through loss of working days, time spent caring for children with IBD, impacted education and secondary health effects caused by the psychological effects of the disease.

In recognition of the hidden cost of the disease, and in order to help reduce the burden of IBD on society, ESPGHAN joined forces with the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) to call on policy makers to take the following four key steps: 

  1. Greater resources should be provided to enable more subspecialty paediatric GI training to better manage the diseases in childhood.
     
  2. Long-term and gradual transitional arrangements between paediatric care and adult care should be a key part of the care pathway to ensure the most effective and least disruptive long-term disease management.
     
  3. Improved education and workplace policies that better consider the needs of PIBD patients and parents and carers of children with PIBD should be implemented.
     
  4. Children with IBD must be treated by a multidisciplinary team looking not only at the medical aspects but also areas related to the patient’s life, such as lifestyle, diet, social and physiological needs.

World IBD day took place on the 19th May 2019. 

Our information video can be found here.

Also available for download are the IBD Manifesto and infographic. 

International Coeliac Day 2018

On May 16th, 2018 ESPGHAN partnered with the Association of European Coeliac Societies (AOECS) for International Coeliac Day.

The two societies agreed to focus activities on raising awareness of paediatric coeliac disease; specifically, the issue of under-diagnosis and the need for earlier diagnosis.

ESPGHAN & AOECS developed a manifesto for change, titled Paediatric Coeliac Disease – earlier diagnosis for better lifelong health. The manifesto included an overview of paediatric coeliac disease, the high-risk groups, common symptoms and three steps to promoting earlier diagnosis. In addition to the manifesto, ESPGHAN and the AOECS produced an infographic on coeliac disease in children

The infographic provided key statistics and information of coeliac disease throughout Europe, as well as details of groups at a heightened risk and the main symptoms of coeliac disease in children

ESPGHAN provided National Societies with the opportunity to translate the manifesto and infographic to their native language to increase reach and visibility of the key messaging

The manifesto was translated into ten languages and the infographic to eight different languages.

Societies are permitted to utilise and share the manifesto for change and infographic on this webpage, via their own websites, magazines and social channels. 

COVID-19 Initiatives

COVID-19 Parental Advice Guide

In this parental advice guide, ESPGHAN’s Public Affairs Committee provides information and guidance for parents on gut, liver and nutritional conditions in children during the COVID-19 pandemic. It highlights the risks for children with a gut, liver or nutritional condition, how to act when seeking medical help and the key symptoms which require parents to take their child to hospital. It also offers guidance for parents with a child that has already been diagnosed with a gut, liver or nutritional condition.

To view our COVID-19 Parental Advice guide, please click here.

EU Lobbying Initiatives

The MEP Manifesto

As part of a mission to secure the best possible paediatric care for the 106 million children living in the European Union, ESPGHAN, and its patient and parent association partners, have identified a number of key challenges facing paediatric care, and outlined key steps required from policy makers to deliver better health and patient outcomes across Europe.

The key issues facing paediatric care across Europe:

  • Paediatric care in a paediatric setting
  • The importance of effective transitional care
  • Earlier diagnosis and treatment for a better quality of life

3 steps that MEPs can take:

  • Raising awareness of early-years is critical to lifelong health
  • A new EU health policy focused on healthier children
  • Advocating for the voice of children

Read our MEP Manifesto in full here for further information.