Highlights

2024 courses - SAVE THE DATES

The website is currently being updated with the three in-person courses that will be rolled-out in 2024:

1. Metabolic myopathies - challenges and solutions, 16-18 May, Split, Croatia

2. Adrenal failure: causes, diagnosis, treatment, crisis and life-expectancy, 17-19 October, Stockholm, Sweden

3. Cell trafficking and complex lipids: an interconnected network of rapidly expanding disorders, 28-30 November, Rome, Italy

 

Promoting learning and rare disease research

The Foundation offers clinicians and scientists the opportunity to share experience in the management and outcome of rare diseases. Junior doctors learn from the experience of renowned international experts and discuss cases that were previously a mystery to them. The Foundation also provides the platform to discuss the latest scientific progress and research collaboration.
 


Training and education in rare disease

The Foundation develops and delivers tailored solutions in training and education, for healthcare professionals, to promote accurate diagnosis of rare diseases and care of patients. The courses are designed and administered by healthcare professionals.