Newly Diagnosed Weekends
Our Newly Diagnosed Weekends (NDW) are free events for members that support parents who have recently found out their child has a bleeding disorder. We bring together experts in bleeding disorders 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 families with a child/children (aged 0 to 14 years) diagnosed with a bleeding disorder in the past year. Families attending must be members of The Haemophilia Society, which is free to join.
Who will be there?
We invite up to 15 families per weekend event.
Over the course of the weekend, you will meet a range of people involved in bleeding disorders care, including:
- haematology consultant
- clinical nurse specialist
- young people living with a bleeding disorder
- play specialist
- staff from The Haemophilia Society
The professional speakers were very informative and we really enjoyed learning from them and mixing with other families with the same condition.
Our NDW is a very informal event. Some sessions involve talks and presentations, giving 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.
Laidback atmosphere and bitesize information, although if you wanted to dive deeper into concepts the opportunity was there.
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
Opportunity to meet other families and network, making contacts for the future. Sharing stories, experiences and best practice.
While you are attending the sessions, there is a specialised crèche nearby for 0-16 year old (with staff experienced in looking after children with bleeding disorders) where the children have the opportunity to be cared for in a safe, secure and fun environment. From structured activities to free play, our mobile crèche ‘zones’ are created for specific age ranges, so all children enjoy the experience. Older children can listen to the talks with parents if this is preferred.
I’d never left my child in a creche before, but the staff were amazing and so considerate to my concerns. He settled quickly and I was able to listen to the speakers without worrying. Thank you.
Where are Newly Diagnosed Weekends held?
The events are held in a hotel and all sessions take place in the same building. The locations vary – we try to make sure that people don’t have to travel too far. We currently have events scheduled for Manchester and Essex.
How long does it last?
Guests arrive on Friday afternoon. The sessions, in the conference suite, start on Saturday morning and finish around lunchtime Sunday. Lunch is provided in the conference suite for yourself and child/ren.
We encourage all families attending our weekend to join the haemophilia team on Saturday night for a networking dinner so that you get to meet others similar to you.
How much does it cost?
Our NDWs are FREE for UK members only. Your weekend includes food (breakfast, lunch and evening meal) and accommodation for yourself, your partner and your child/ren. We do not pay for any alcoholic drinks, additional room service or travel costs.
How do I register to attend?
Our Newly Diagnosed Weekends are very popular and there is often a waiting list.
If you are not a member please click the link to join – Become A Member
You can register here to be added to the Newly Diagnosed Weekend waiting list.