Hyaline Fibromatosis Syndrome

Flyer

Here in Lausanne, we are committed to advancing our knowledge both on the basic aspects of HFS and on the clinical and practical aspects that affect the daily life of patients and their families. We are two groups working together; one based at the EPFL Lausanne (an academic centre of excellence in biomedical research) and one at the University Hospital in Lausanne (with experience in the diagnosis and care of patients with HFS). We believe that a close cooperation between affected individuals, health professionals, and basic researchers devoted to finding a cure for the disorder will greatly accelerate progress in the field.

For this reason, we are organizing an International Hyaline Fibromatosis Syndrome Day dedicated to HFS patients and their families.

The objectives of this meeting are several:

• First and foremost, it will give families the opportunity to meet and exchange information.
• It will enable affected individuals and their families to meet scientists and doctors with specialized knowledge on HFS.
• It will allow us physicians and researchers to learn more about the clinical course of this disorder, particularly about which medications (e.g., pain medications) and interventions (dentistry, surgery, or others) have been so far most helpful for affected children and adults.
• It will allow us to learn what are the practical problems faced by patients and help us identify the unmet needs for these patients (« doctors learning from patients »)
• It will allow us to offer molecular diagnosis to individuals who have not had a molecular diagnosis so far, and at the same time accept samples to extend the research and try and offer personalized therapeutic approaches.