Malena Vetterli is the founder and president of the patient organization “FMF & AID Global Association”. Her background is in business administration and finance, where she has worked for both a bank and a Clinical Research Organisation. Due to her international upbringing, languages have always been her strength, as well as her networking ability. Little did she know, that years later, she would find a broader use for her language skills and experience in the CRO.
Unfortunately, her son had serious health issues and after years of trying to get a diagnosis and treatment, she faced many obstacles and mounting problems. There didn’t seem to be much information or help readily available. She turned to the internet and social media in search of answers. It soon became clear to her that there were many others in a similar situation. In 2011, she heard for the first time about Familial Mediterranean Fever (FMF), an autoinflammatory disease (AID) which causes inflammation of the internal organs.
Now that she finally had a name for her son’s condition, she started to look for other patients. Shortly after, she had managed to connect with many others not only in Switzerland but also in many other countries. In January 2017, the FMF & AID Global Association was born in Zurich, a non-profit patient organization. Due to her hard work and dedication, it soon became an international umbrella organization. Five years after founding the FMF & AID, it is already helping ca. 80,000 patients from over 54 countries and in 12 different languages.
In 2017, the European Commission created 24 European Reference Networks (ERNs), and one of them is the ERN RITA, which covers immunodeficiency, autoinflammatory and autoimmune diseases. It was also decided that each ERN was going to have a European Patient Advocacy Group. The council for the ERN RITA is called RIPAG. The FMF & AID is very proud to have been selected as one of the five patient organizations across Europe to be part of the RIPAG Council, and to actively represent patients.
A few months later, Malena Vetterli was selected to do the EUPATI Patient Expert Training Course.
She is also a member of the Novartis Autoinflammatory Council, along with other patient organizations.
She has already been requested to represent patients and participate in the issuing of new worldwide guidelines on autoinflammatory diseases (EULAR), along with renowned medical professionals from all over the world.
She has just joined (May 2018) the EU funded project “ImmunAID” (Immunome project consortium for AutoInflammatory Disorders), which will run for the next 5 years.
EUPATI Fellow: After completing an 18-month EUPATI course, she has just completed successfully the 3rd EUPATI Expert Training Course. She is now a recognised patient expert and she also expects to be much more actively involved in determining the course of future research into medicines for autoinflammatory diseases.
She has recently been asked to be part of the Autoinflammatory Advisory Board for Switzerland which is currently being formed.