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Suzanne Pasmans and other members of the Dutch Expertise Center invite you to participate in the Netherton International Conference. This event will take place online on November 26 from 4 p.m. to 7 p.m.
A few words about Netherton’s disease :
As you know, Netherton syndrome is a rare disease. Babies born with Netherton syndrome are extremely vulnerable. These babies are struggling to thrive. They suffer from allergies, lose body fluids and can become dehydrated. They are very susceptible to infections. Later in life, people with Netherton syndrome are still vulnerable due to damaged skin. Their skin does not function as a barrier, bacteria and other victims can easily harm their body and their health. The condition can also be a primary immune deficiency, which affects the entire health of the patient. Patients tend to have more infections and usually spend a lot of time in hospital or on treatment at home. Their skin is red or scaly, cloud-shaped, called Ichthyosis Linearis Circumflexa.
Rotterdam Netherton Center of Expertise invites all people with Netherton syndrome and their families, but they also invite dedicated professionals to this meeting.
Netherton’s center of expertise is part of the European Skin Reference Network (ERN-SKIN). Professor Christine Bodemer also supports this initiative as a Netherton expert and responsible for ERN-SKIN. This network of professionals provides a solid basis for building cross-border knowledge. Our main goal is to gather a lot of information, to develop a health care plan for the next ten years, to improve the quality of life of people with Netherton syndrome.
More information here : https://www.youtube.com/watch?v=gM7...
Les ichthyoses ou la maladie face à la discrimination