BERLIN'S PRIMARY LYMPHOEDEMa Community
Community for children with primary lymphoedema.
A safe space for children, families and parents — to share experiences, learn together and never feel alone.
OUR STORY
Why we created the community
When a child is diagnosed with primary lymphoedema, families are often left with few answers and almost no community to turn to.
My name is Mara. My son was diagnosed with primary lymphoedema distichiais at age five. Our lives changed the day we heard that diagnosis — and this group grew from that experience.
This group exists to offer a safe, welcoming place where children and families can connect, share and learn to manage the condition — day by day.
You are in the right place
if...
Your child has primary lymphoedema
You are looking for families who truly understand what daily life with this condition looks like.
You are a parent or caregiver
Navigating the daily reality of lymphoedema management with a child and looking for support.
Do you speak German or English?
We meet in German — and we are exploring an English session for families across Europe. Let us know.
Once a month — online
Regular meetings to share experiences, ask questions and stay connected with other families.
LYlife IS PART OF A LARGER MOVEMENT
Lymphselbsthilfe e.V.
Lymphselbsthilfe e.V. is an association supporting people affected by lymphoedema and lipoedema across Germany, recognising the importance of self-management and community.
Beyond our children’s group, they offer online support groups for all ages, so every person affected by lymphoedema can find their community.
18-35 years
JuLys — Junge Lymphselbsthilfe
Navigating the daily reality of lymphoedema management with a child and looking for support.
+35 years
LiLyOn
Navigating the daily reality of lymphoedema management with a child and looking for support.
Children
KIF11 Gen — Network
Network for families, doctors and therapists affected by KIF11-related lymphoedema.
READY TO JOIN?
You don't YOU NEED TO Face
Lymphoedema alone.
Joining is free! Write to us and we will add you to the next meeting invitation.