Vereniging voor Icthyosis Netwerken
The Vereniging voor Icthyosis Netwerken organized an International Virtual Congress, "The International Netherton Congress THINC", for doctors, patients, and their families. This was the very first worldwide event for Netherton Syndrome, a rare disease, with only one in a million patients.
The goals for this congress were to exchange experiences of patients, their journey, among other patients and professionals, to plan for best practice care in the next five to ten years, and to build an international Netherton network.
There were more than 90 participants from all over the world - 60 patients and caregivers, 30 Dermatology experts, and 2 pharma companies.
Attendees included patients and doctors from around the world, as well as speakers from France, the United States, and the Netherlands. Speakers shared stories about their experiences living with Netherton Syndrome, Researchers Amy Paller, Suzanne Pasmans, and Virgil Dalm explained scientific literature, and a panel discussion was held about future goals. Through the GlobalSkin Impact Fund, the Vereniging voor Icthyosis Netwerken was also able to create a brand identity for the event with a dedicated website, published collateral, ads, and articles.
