Berlin’s first Support group for children with Primary Lymphoedema
Young people, children and their families with a history of lymphoedema need support tailored to their needs, where young people feel comfortable and parents feel supported.
Events, meetings and appointments with professionals, both in
Berlin and digitally.
Why we created this support group for children
The feeling of helplessness that often comes with living with lymphedema, combined with guidance from specialist doctors, led to the creation of this support group.
My name is Mara. I live in Berlin and I am the founder of the group. My son Lorenzo, who is 11 years old, has primary lymphedema distichiasis. Our lives changed when he was five, after his first episode of erysipelas, which led to the diagnosis.
Despite many existing support groups, there are very few spaces where children can truly feel comfortable and understood.
This group was created to offer a safe and welcoming place for children with lymphedema and their families to connect, support one another, and learn how to manage the condition day by day.
Stay Updated — Sign Up for Our Newsletter
Subscribe to our newsletter to stay up to date with all the latest news and important information about lymphedema, as well as details of future events. Join our community newsletter to receive lymphoedema updates, expert insights and early access to features designed by and for patients.
Support for young people, kids and their families
Our goal is to connect children living with primary lymphoedema and their families, to share experiences, exchange knowledge, and build a supportive space tailored to their unique needs.
This is the first initiative of its kind in Berlin, and we are just at the beginning.
Together, we want to create a strong and caring network — both locally in Berlin and across Germany through online events.
Support Group Location – Berlin (Lichtenberg)
Our support group for children and families affected by lymphedema is hosted at the following location:
Self-Help Contact Point Lichtenberg – Synapse
Schulze-Boysen-Str. 38
10365 Berlin, Germany
Lymph Selbsthilfe e.V
Our support group for children and families affected by lymphedoema is part of a wider community that supports people of all ages.
Lymph Selbsthilfe e.V. is an association that, as well as creating a community, recognises the importance of self-management for people affected by lymphedema and lipedema. For more information, please view the brochure and become a member
Supported by:
