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.
Who is LYlife the primary lymphoedema support group
for?
Your child has primary lymphoedema
You are looking for families who truly understand what daily life with this condition looks like.
As a parent or caregiver, you are looking for support
Navigating the daily reality of lymphoedema management with a child and looking for support.
Language: We meet in German — English sessions coming
We meet in German — and we are exploring an English session for families across Europe. Let us know.
Once a month — online and free
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.
When a child is diagnosed with primary lymphoedema, families
are often left with few answers — and almost no support group
for children with primary lymphoedema to turn to.
LYlife grew from that experience. Founded by a mother who
lived through this diagnosis firsthand — and who understood
how much a single conversation with someone who truly
understands can change everything.
Today, LYlife is a safe, welcoming space for children and
families with primary lymphoedema. Furthermore, it is a place
to share experiences, ask questions and learn to manage the
condition together — day by day. Moreover, you can read more
about primary lymphoedema in our dedicated guide for parents: → Read the article