People living with familial chylomicronemia syndrome and other severe genetic forms of hypertriglyceridemia face one of the most demanding dietary restrictions that exist. To address the everyday challenges this entails, the Lipids and Vascular Risk Group of the Endocrinology Department at Hospital Clínic Barcelona and Fundació Catalunya La Pedrera, through Alícia Foundation, have worked together with people affected by the disease to develop a range of practical resources. These include a nutrition guide, educational materials on the fat content of commonly consumed foods, a cookbook featuring more than 40 recipes and video recipes, and practical tools such as the "Fat Meter", which makes it easy to identify the fat content of foods in a highly visual and intuitive way.
The project was funded by Fundació Catalunya La Pedrera and developed by Alícia Foundation and Hospital Clínic Barcelona. It is supported by the CIBER for Obesity and Nutrition (CIBEROBN) and endorsed by the Spanish Society of Endocrinology and Nutrition (SEEN), the Spanish Atherosclerosis Society (SEA), and the Catalan Society of Lipids and Atherosclerosis (SOCXULA).
Addressing an unmet clinical need
Familial chylomicronemia syndrome is a rare genetic disorder characterized by extremely high levels of triglycerides in the blood. These levels can lead to recurrent abdominal pain and acute pancreatitis, a serious complication. For this reason, affected individuals must follow a very strict low-fat diet, often limited to less than 15 to 20 grams of fat per day. This is particularly challenging when considering that a healthy person following a balanced diet typically consumes around 70 to 80 grams of fat each day. To put this into perspective, just two tablespoons of olive oil contain approximately the same amount of fat, as do five walnuts or five medium-sized sardines.
"For people living with this condition, diet is an essential part of treatment. Many everyday decisions, from grocery shopping and cooking to eating out, require careful monitoring of the fat content of foods. This guide provides practical resources that will help patients and their families manage these challenges with greater confidence and independence," explains Dr Emilio Ortega, endocrinologist at Hospital Clínic Barcelona.
From the clinic to the kitchen
The initiative combines the clinical expertise of physicians and dietitians specialising in severe dyslipidaemias at Hospital Clínic Barcelona with Alícia Foundation's experience in culinary medicine and in developing food-based solutions for a wide range of health conditions. People affected by the disease also played an active role in designing and validating the materials, ensuring they address real-life needs. The result is a collection of resources designed to translate nutritional recommendations into practical tools that are easy to incorporate into everyday life while continuing to enjoy food.
The guide includes dietary recommendations, sample menus, advice on understanding food labels and guidance on adapting the Mediterranean diet to a very low-fat eating pattern. It also features a tool that allows users to quickly identify the amount of fat provided by foods across different categories, including meat, fish, legumes, cereals, vegetables, fruit and nuts, based on everyday serving sizes. In addition, it provides shopping tips, weekly meal plans and other resources that help with meal planning and day-to-day decision-making.
The publication is complemented by a cookbook featuring more than 40 adapted recipes, video recipes and educational visual resources showing food quantities equivalent to one gram of fat across different food groups, including meat, fish, dairy products and legumes, as well as snack ideas suitable for a wide range of audiences.
The materials can be viewed and downloaded at: https://alicia.cat/es/noticia/alimentacion-cocina-baja-en-grasas-sindrome-quilomicronemia-familiar/
"We wanted to create highly practical resources that would help people manage their diet in everyday life. Our goal was to demonstrate that, despite the limitations associated with such a restrictive medical requirement, it is still possible to maintain a varied, safe and enjoyable diet that is both gastronomically and sensorially appealing," says Alba Coll, dietitian-nutritionist at Alícia Foundation.
Presenting the resources to patients and families
To raise awareness of the materials, the project has been presented to healthcare professionals through an in-person workshop held at Món Sant Benet for the Catalan Association of Dietitians-Nutritionists (Codinucat), as well as at the annual congress of the Spanish Atherosclerosis Society (SEA). The resources are also scheduled to be presented in November at the third edition of the seminar "Practical Management of Rare Dyslipidaemias", organised by SEEN with the participation of SEA.
The materials have also been presented to people living with these conditions and to their families and caregivers through an online session attended by more than 100 participants. The event included presentations of the different resources developed as well as a practical culinary demonstration, with contributions from professionals at both Hospital Clínic Barcelona and Alícia Foundation.
Following this event, and with the aim of ensuring that these resources reach as many people as possible, all materials are now freely available. They are intended to support people who need to follow a very low-fat diet, as well as their families and the healthcare professionals involved in their care.
Improving the quality of life of people living with rare diseases
The materials are primarily intended for people with familial chylomicronemia syndrome, but they may also prove valuable for other patients with severe hypertriglyceridemia who require strict fat restriction. At the same time, they provide useful educational tools for anyone interested in understanding the fat content of foods and making healthier dietary choices, one of the cornerstones of cardiovascular disease prevention.
The initiative aims to improve the quality of life of affected individuals and support adherence to a dietary treatment that remains essential for reducing the risk of complications. Nutritional intervention continues to be the cornerstone of treatment and remains indispensable even in the era of new targeted therapies. In addition, the project provides patients and their families with practical, evidence-based resources to help them face the everyday challenges associated with these rare conditions with greater confidence and security.
