Newly 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.

By joining The Haemophilia Society, you are part of a supportive and knowledgeable family, full of people who’ve been through what you’re going through and want to help.

Although many assume only children are newly diagnosed with bleeding disorders, many people, particularly women, do not get a diagnosis until adulthood.

Wherever you are in this journey we welcome you. We have a wide range of leaflets and resources to help you better understand your condition and we organise a range of events each year which provide information and support.

For parents and carers we organise regular Newly Diagnosed Weekends around the UK which give practical and emotional support for the whole family, including dedicated time and space to meet and learn from medical experts and each other.

Virtual NDW

On 31 October 2020 we held our first Newly Diagnosed virtual event. We didn’t want our new families to miss out on this educational and informative event due to the ongoing Covid-19 restrictions.

This event, designed to support parents who have recently found out their child has a bleeding disorder, brings together experts in bleeding disorders care so families get the help they need to ensure their child gets the best possible care.

If you would like to watch our speaker presentations, please register on the link below.

We also hold an annual Members’ Conference where we come together to hear from leading experts in haemophilia care and to swap experiences.

Our Talking Red campaign and annual conference offers women with bleeding disorders a space in which to share experiences and knowledge as well as forming a support network.

If you’re not sure where to start, give us a call. You can contact The Haemophilia Society on 020 7939 0780. You can also register to be added to the Newly Diagnosed Weekend waiting list.

Read more about the experiences of families we support (PDF)

Find out more about our Newly Diagnosed Weekends

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