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.
Upcoming Event!
We’re excited to announce that the next European Chromosome 11 Network Conference will take place in 2026!
Thursday April 9th to Sunday April 12th april 2026 - Pforzheim
We look forward to meeting you again in person at the conference — a key moment for strengthening the bonds within our community. Whether you’re joining us for the first time or are among our long-standing families, your presence truly matters.
Again this year, there will be no participation fee. If you can join us in Pforzheim, only your hotel costs (room and meals) will be charged. Thanks to the Action Mensch grant (Germany) we applied for after the last conference, and private donationsI, we can again reduce your stay costs by more than 30% compared to regular hotel prices. In addition, thanks to a new grant obtained this year from Else Kröner-Fresenius-Stiftung, we are able to offer a discount for newcomers — this applies to families attending for the first time.
We hope these efforts toward fair pricing will allow many families to join us and encourage new families to participate for the first time.
Click here to register for the conference
Agenda
Click below to view the draft agenda (also available on the registration website). Please note that it is still subject to change. We hope you’ll like it. We have done our best to incorporate the feedback collected in 2024.
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.