Malena Vetterli, founder and president of FMF & AID Global Association: Familial Mediterranean Fever and Autoinflammatory Diseases, established in Zurich in 2017. The association has been elected into the European Reference Networks (ERN) Patient Advocacy Group, to actively represent patients. Malena is also a member of the Novartis Autoinflammatory Council and has been asked to represent the patient voice at EULAR and in an EU financed project.
About the training course, Malena commented: “The few gaps I had are being well addressed through the EUPATI course. After completing this course, I will be a recognised patient expert. What’s more, I expect to be much more actively involved in determining the course of future research into medicines for Familial Mediterranean Fever and other auto-inflammatory diseases.”
Like many patient representatives, Malena faced numerous obstacles and mounting difficulties seeking diagnosis and treatment, when her son developed serious health issues. Since there was little information or help available, Malena turned to the internet and social media in search of answers and there she found many patients and carers in a similar situation. In 2011, she heard for the first time about FMF and AID, causing inflammation of the internal organs. Having finally found a name for her son’s condition, she reached out to connect with many other patients.