A lot of the knowledge we have on the Jacobsen syndrome specifically (and chromosome 11 disorders in general) comes from parents sharing their experiences. However, we are also very grateful that we are in contact with professionals from around the world that have done research. As a network we support research and in addition to that our members contribute to the research data.
Our friends from the American Jacobsen Network created an overview of the medical articles which we gladly refer you to.
Orphanet is a comprehensive resource offering detailed information on rare diseases, such as Jacobsen syndrome.
A lot of information is also summarized in a leaflet from the organisation Unique.
Various translations are available on the Orphanet website.
About our external links:
The European Chromosome 11 Network e.V. is not responsible for the content, quality, or functionality of external links provided on this website. While we strive to keep our links up to date, we cannot guarantee their accuracy or accessibility. Please note that the information on external websites may not necessarily reflect our views or opinions. If you encounter any issues or have questions or recommendations, please feel free to contact us.