At the European Chromosome 11 Network, we support individuals and families affected by Jacobsen Syndrome and other chromosome 11 disorders by providing resources, fostering connections, and raising awareness to ensure no one faces these challenges alone.
The network
We have more than 100 members from all over Europe. As a self-help organisation, we try to collect and share the knowledge and experiences of families.
Disorders
Chromosome 11, despite its medium size, contains many genes. Mutations in these genes can cause various diseases and symptoms, including Jacobsen Syndrome, a well-known disorder linked to this chromosome.
Research
The Chromosome 11 Network works closely with the research community. At our conferences, scientists, doctors and therapists report on new findings and are available to answer questions.
Get in touch.
Whether you're a parent whose child has just been diagnosed, or a friend or relative seeking information, we're here to support you. Please don't hesitate to get in touch.
What We Offer
- Family and Patient Support: We ensure that families and patients can connect with each other to share experiences and offer them the opportunity to get in touch with specialists.
- Community Building: We bring families and patients together and encourage local gatherings.
- Newsletters: Members receive newsletters a few times a year from the board.
- European Conference: Every other year, we organize a conference for families and researchers. This event is our major platform for exchanging information and experiences.
- Research Support: We support research on chromosome 11, both financially and by providing research data.