Our Newly Diagnosed Weekends (NDW) are free events which support parents who have recently found out their child has a bleeding disorder. We bring together experts in haemophilia care to share knowledge and experiences so families get the help they need to ensure their child gets the best care.
Who can attend?
Our NDW events are open to any family who has a child aged 0 to five that has been recently diagnosed with a bleeding disorder, such as haemophilia or von Willebrand disease. Families attending must be members of The Haemophilia Society, which is free to join.
Who will be there?
We invite 10 – 15 families per weekend event.
Over the course of the weekend you will meet a range of people involved in haemophilia care, including:
- haemophilia consultant
- play specialist
- haemophilia nurse specialist
- young people living with a bleeding disorder
- staff from The Haemophilia Society
A NDW is a very informal event. Some sessions involve talks and presentations which give everyone the chance to ask questions and find out what they need to know. Other sessions are more practical, such as demonstrating how to give an injection or how to support a needle phobic child.
There are also break-out sessions allowing parents to talk together or to ask professionals about a specific issue. The Society’s Youth Ambassadors attend to give an insight into how to live life to the full with a bleeding disorder.
What will I get out of it?
Parents tell us that the NDW made them feel less isolated and more informed about their child’s condition. Everyone takes away something different, but we hope you’ll gain some of the following:
- better understanding of your child’s condition
- meet parents in a similar situation
- gain an insight into adult life with a bleeding disorder
- get practical tips on helping young children through treatment
- explore your feelings about having a child with a bleeding disorder
- meet haemophilia healthcare experts in an informal setting
- space to focus on your family and how best to deal with the bleeding disorder
We offer a free creche operated by staff with experience of dealing with children with bleeding disorders which is open to all children. This is a whole family event and we welcome all children, including siblings without a bleeding disorder.
Where are Newly Diagnosed Weekends held?
The events are held in a hotel and all sessions take place in the same building. The location of the hotel varies – we try to make sure that people don’t have to travel too far.
How long does it last?
It starts on Friday afternoon and finishes on Sunday afternoon
How much does it cost?
Our NDWs are free. The Society covers the cost of accommodation and meals, excluding drinks.
How do I register to attend?
Our Newly Diagnosed Weekends are very popular and there is often a waiting list. When you join The Haemophilia Society we will contact you to find out if you’d like to attend. You can also let us know that you’re interested by emailing firstname.lastname@example.org