Fiona Waddell, the Country Coordinator of Rare Commons in The Netherlands, participated last Friday at the Dutch CDG Day with a presentation about the Second World Conference on CDG and about our research project on Rare Commons.
The audience was very interested in participating in the international project concerning different types of CDG and asked various questions in order to know more about the project and made suggestions about things to possibly include in the project. One of the suggestions was related to know more about the side effects of medicines, because some patients have adverse effects with the administration of specific drugs.
It is the intention of Rare Commons to collect data relating to various aspects of drugs administered to patients with CDG, both currently and in the past, in order to understand all aspects of drug administration including side effects.
Another question raised by the parents of children with CDG during the conference, was the need to study the aversion that some patients have to simple sugars and their preference for carbohydrates. This is an aspect that will be studied in the section of the project related to gastrointestinal effects.
Dr. Eva Morava and Dr. David Cassiman also participated in this event. They are two of the main researchers in the world of Congenital Disorders of Glycosylation.
During the conference Fiona Waddell presented the different posters that the Portuguese Association of CDG designed with the aim of increasing awareness of the different aspects of the diseases.
The team of Rare Commons appreciates the work of Fiona Waddell in highlighting the purpose of Rare Commons in The Netherlands and also for answering the questions that the families asked during the conference. Many thanks to her for being our Country Coordinator in The Netherlands.
<< terug