SUPPORT NETWORK
We are a fundraising charity, not a clinical service. If you are in crisis or need urgent medical advice, please contact your hospital team or call 999.
WHO WE SUPPORT
I am Tom's mum and I set up this Charity after losing him. I know first-hand how isolating this grief can be. EBV-HLH moves fast and it is rarely understood by those around you — friends, wider family, sometimes even the medical team. We want to connect you with people who truly get it.
EBV-HLH is often fatal. The grief that follows is made harder by the fact that so few people have heard of it — which can make it almost impossible to explain, and very isolating to carry. We are building a community of families who understand this particular loss from the inside.
When you lose someone to EBV-HLH, you are often left with as many questions as you are grief. Why did their immune system react this way? Why wasn't it caught sooner? Why had nobody heard of it? We can't answer all of those questions — but we can point you towards the research that is trying to, and connect you with others who are asking the same things.
I am Tom's mum and I set up this Charity after losing him. I know first-hand how isolating this grief can be. EBV-HLH moves fast and it is rarely understood by those around you — friends, wider family, sometimes even the medical team. We want to connect you with people who truly get it.
Moderated and safe, not public-facing
Always — no cost to join or participate
This space centres those who have lost someone to EBV-HLH
Leave your email and we'll let you know the moment the community is open — you'll be among the first in.
We are a fundraising charity, not a clinical service. Nothing here constitutes medical advice. In an emergency, call 999.
© The Tom Towler EBV-HLH Charity | Charity number: 1218180
Website design by Wiggle Creative