Recently diagnosed? Finding out that you or your child has a bleeding disorder can be a stressful experience, and we’re here to help you to make sense of it all.
This section aims to answer some of your questions and let you know how we can support you and your family, now and in the future.
Life Stage 1: Newly diagnosed children and their families
For parents and carers, a child’s diagnosis is often a traumatic and lonely time for various reasons – especially for the third of families for whom there’s no history of a bleeding disorder.
Some of you have fallen under suspicion of abuse, having to prove to relatives, friends or social workers that the bruising is a medical symptom, not a sign of violence.
At this stage, you want information and reassurance on what lies ahead, and you need plenty of support from others who understand exactly how it feels.
We aim to provide practical and emotional support for the whole family, including dedicated time and space to meet and learn from medical experts and each other at our regular weekends for families with children aged 0-5.
These weekends for newly diagnosed families are jam-packed with information, sessions with physiotherapists, paediatricians and specialist nurses, and time to swap stories and make new friends.
A specialist crèche offers fun play and learning for your little ones while you join sessions or take a well-earned break.
Locations and venues vary: please get in touch for more information and to request a place for your family.
Our thanks to Bayer, sponsors of our work with newly diagnosed families.