ABOUT THE PROJECT

Healthy and active aging is one of the greatest social challenges in EU facing longer life expectancy. Early prevention of chronic diseases that have severe impact on general well-being of patients is extremely important if we want to reach this goal and ensure sustainable health care systems in CE. Lack of development and promotion of innovative quality health services, disease management models and education have a profound negative effect. To tackle this challenge, this project demonstrated development and pilot testing of innovative health service model in management of celiac disease (CD), aiming at improving knowledge, management and organizational capacities. CD is model of a lifelong disease caused by ingestion of cereals. It affects 1-3% of population (up to 5 million in CE) of all ages. It is estimated that 80% of people having CD are un/misdiagnosed Diagnostic delay remains 6-10 years. Undiagnosed/untreated CD leads to a number of sever (potentially preventable) complications: infertility, osteoporosis, neurological disorders, malignancies, etc, which have profound effect on quality of life. CE regions have different knowledge capacities and health care systems, the Focus IN CD project improved the knowledge and addressed current problems. By transnational cooperation and analysis of differences in diagnostic approach, experts' knowledge and patient awareness and satisfaction and benchmarking of existing patient management models we gained important data to develop e-learning tools for health care personnel and patients, to close the knowledge gap between stakeholders and to improve patient support. In each region an innovative pilot services were tested, based on which a comprehensive celiac disease management model was designed including organizational improvements and implementation of best practices. This enabled us to develop a patient centered health care service, and thus ensure healthy and active aging of CD patients.

Misija ENDOSKOPIJA
  
Kratek animiran video, ki bo pomagal vašim malim bolnikom bolje razumeti osnovne principe endoskopije zgornjih prebavil, ki je včasih potrebna za opredelitev osnovnega vzroka različnih težav, kot so dolgotrajne bolečine v trebuhu, dolgotrajna driska, težave pri požiranju itd.







How to prepare a safe gluten-free meal – a sticker with the most important instructions for restaurants and households.

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Kaj se dogaja v tankem črevesu osebe s celiakijo







What happens in the small intestine of someone with celiac disease









ICT App forHCPs

E-learning tool for patients

E-learning tool for HCPs

Policy recommendations for patient focused celiac disease management model include the guidance on how to most effectively address the challenges of CD management in the framework of existing health care systems, by using interdisciplinary approach and new innovative services. Recommendations were built upon detected knowledge and management gaps and inequalities in the region and best services and solutions designed and tested by project partners within the project. Policy recommendations provide key innovative solutions and services. Suggested recommendations could minimize health complications of CD patients in long-term period of time, therefore are crucial to be taken into consideration. To ensure quality of life of CD patients, also legal framework conditions are relevant. Two policy recommendation are suggested: ensuring basic social rights (finance, i/material) for patients of all ages and reducing the value of added tax for gluten-free products, which should be used by interested stakeholders to influence changes, to convince decision makers and to improve situation in Central Europe.

Policy recommendations fact sheet

CHALLENGES TACKLED BY THE FOCUS IN CD PROJECT

Among the greatest social challenges facing Europe is longer life expectancy with aging population. This fact has also contributed to increased burden of chronic diseases among European population in the past decade. Lack of development and promotion of innovative quality health service, disease management models and education in the field of management of chronic diseases, is affecting sustainability of central European health care systems.

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How to set up a safe gluten-free kitchen?


To the health of patients with coeliac disease even the smallest mistakes and contamination of the gluten-free products can be harmful.
In order to ensure a safe, strict gluten-free diet it is important to buy gluten-free products, but also to store and prepare them properly to be able to produce a real gluten-free meal as a result. To help with tips and suggestions on how to prepare the kitchen surfaces and rearrange the articles in the kitchen, check the “Gluten- free Kitchen” video:


e-guidelines for newly diagnosed celiac disease patients in Slovene language

Few months ago, we published our e-brochure for newly diagnosed celiac disease patients in English, we translated the comprehensive brochure into Slovene language, which is the first brochure in partner language, Croatian and Hungarian guidelines will be available soon.

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IGOR'S Story

The condition was staring me in the face, I just didn’t see it. As I am a paediatrician who knows about the symptom, I should have got it sorted sooner.

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Reka'S Story

First, the diagnosis shocked me, because I realized I cannot eat the way I ate before and it is really important to take my gluten free-diet really strictly. But after some horrible weeks (or maybe months), I could accept my disease and learned to live with it, because life always goes on.

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NUŠA'S STORY

The diagnosis “coeliac disease” was among the suspicions of doctors for the best and the least harmful disease. We were happy, that the marathon from one doctor to another had finished.

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MARINA’S STORY

For so many years I lived my life in pain, got wrong diagnosis, and took wrong therapy. After gluten free diet the pain in my muscles and joints disappeared.

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LAra'S STORY

Soon, after Lara has started the gluten free diet, her mood, disposition and health remarkably improved. She began to gain weight and to grow. At home, we all switched to gluten free diet, as we wanted to provide our daughter with un unstressful environment, where she would not have to doubt if the food is gluten free and take care about the hygiene because of cross contamination. Read more…

LUKA'S STORY

Story talks about two brothers, Nick and Luke, who
got familiar with the gluten-free diet at an early age because Luke was diagnosed
with the celiac disease. His two years older brother Nick also learned about this
disease, because their parents warned him early on not to give Luke his cookies,
bread and other dishes containing gluten.
Read more...

Project documents


PROJECT IN NUMBERS

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TOOLS

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PILOT PROJECTS

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POLICY RECOMMENDATION

project duration

Start Date

June 2016

End Date

may 2019

contacts