Public Affairs Committee

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. Other languages are also available below. For the Manifesto, please click here. 

Spanish, French, Italian, Portuguese, Czech, Danish, French Belgium,Greek, Hebrew, Romanian, Catalan, Slovak.

Together we can help improve the lives of children. 

World Obesity Day was observed globally on 4 March 2021 with the view of promoting practical solutions to end the global obesity crisis.

ESPGHAN and the European Childhood Obesity Group (ECOG) called on policy makers and healthcare providers to help shape understanding, policies and research that reflect the true complexity of childhood obesity and deliver effective prevention strategies, treatments, and care. ESPGHAN highlights included:

• Direct backing from 8 MEPs who shared their support for our campaign and our infographics on Twitter
• A record number of Twitter impressions for the campaign – 65,000+
• ESPGHAN elected as an official Obesity Care Week Champion
• Official endorsement from the International Federation for the Surgery of Obesity and Metabolic Disorders (IFSO)
• Support from the official World Obesity Day Europe campaign (who shared our infographics)
• 12 National Societies engaged with the campaign, including infographic translations for 11 countries
• 8 ESPGHAN Committee and Working Group Chairs engaged
• Multiple key external stakeholders engaged including (in addition to the above):
- The European Association for the Study of Obesity
- Global Obesity Patient Alliance (GOPA)
- The Nutrition Society
- Specialised Nutrition Europe

Please click here for access to the manifesto, video and infographics. 

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 19^th May 2019. 

Our information video can be found here.

Also available for download are the IBD Manifesto and infographic. 

On May 16^th, 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. 

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.

“Button battery ingestion in children: Never Again” was the theme of the panel discussion hosted by the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) and held during the World Congress of Paediatric Gastroenterology, Hepatology and Nutrition which took place virtually on Friday, 4 June 2021.
Participants included representatives from the European Academy of Paediatrics (EAP), European Portable Battery Association (EPBA), European Society of Pediatric Otorhinolaryngology (ESPO), European Paediatric Surgeons' Association (EUPSA), both the European and the Federation of International Societies for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN and FISPGHAN), Kidsafe Queensland and Royal Society for the Prevention of Accidents (RoSPA).

To download the full statement please click here or visit the dedicated webpage for more information.

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.