The project, created with the participation of affected individuals, includes a dietary guide, educational resources on the fat content of common foods, a recipe book with over 40 recipes and video recipes, and tools like the fat meter to visually identify food fat content. The initiative was funded by the Fundació Catalunya La Pedrera and developed by Alícia and Hospital Clínic Barcelona, with support from CIBEROBN and endorsement from various scientific societies such as SEEN and SEA.
Familial chylomicronemia syndrome is a rare genetic disease characterized by extremely high blood triglyceride levels, which can lead to recurrent abdominal pain and acute pancreatitis. Affected individuals must follow a very strict low-fat diet, often below 15-20 grams per day. These new resources aim to simplify this complex dietary requirement. "This guide offers practical resources that will help patients and their families face these challenges with greater safety and autonomy," explains Dr. Emilio Ortega, an endocrinologist at Hospital Clínic Barcelona.
The initiative combines the clinical knowledge of experts from Hospital Clínic with Alícia's experience in culinary medicine. The materials provide dietary recommendations, sample menus, tips for interpreting nutritional labels, and guidance on adapting the Mediterranean diet to a very low-fat intake. The adapted recipe book and video recipes complement these tools, which are now available for free download via a provided link.
The resources have been presented to professionals and patients at various workshops and conferences, aiming to improve the quality of life for individuals with rare diseases by facilitating adherence to essential dietary treatments that reduce the risk of complications.
