Newly Diagnosed Families Weekend
Our Newly Diagnosed Families Weekend (NDFW) is free 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 NDFW events are open to families with a child/children (aged 0 to 17 years) diagnosed with a bleeding disorder in the past four years. Families attending must be members of the Haemophilia Society, which is free to join.
Who will be there?
We aim to invite up to 15 families per weekend.
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
- parent perspective
- 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 NDFW 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 NDFW 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 and share experiences
- 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 bleeding disorder 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.
Childcare is available while you attend the sessions. The team’s diversity and differing experiences mean that they can cater and care for all age ranges, from two-week-old babies to teenagers. They work with you to guarantee that those charged to their care have the best possible time and are entertained at the most key parts of this event. All childcare staff hold an enhanced DBS certificate, ensuring the professionalism and character of the people looking after your children.
Safe and Sound is a highly reputable childcare provider that has worked at our last three newly diagnosed weekends. They have demonstrated exceptional care and attention to the children in their care, earning outstanding feedback. Parents have consistently praised the warm and welcoming atmosphere that Safe and Sound creates, and have noted that their children feel comfortable and happy in their care. The team goes above and beyond to make sure that children’s needs are met and that parents feel confident and reassured that their child is in good hands. Based on their exceptional performance, it is clear that Safe and Sound is a trusted and reliable partner for our event. We can continue to count on them to provide top-notch childcare services that exceed expectations and ensure the safety and wellbeing of all children in attendance.
Older children are welcome to 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 is the event held?
It is held in a hotel and all sessions take place in the same building. The location varies year to year.
How long does it last?
Guests can arrive from Friday afternoon. The sessions, in the conference suite, start on Saturday morning and finish around lunchtime Sunday. Lunch is provided for yourself and child/ren.
How much does it cost?
Our NDFWs 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, additional meals/refreshments or travel costs.
How do I register to attend?
As places for our newly diagnosed families weekend are limited, we encourage families to register their interest as soon as possible to be added to our waiting list.
Our team will review each application carefully and ensure that families who are selected for the event will receive an invitation in due course. We understand that this event is important to many families, and we will do our best to accommodate as many as possible.
If we are unable to offer a place for the upcoming event, we will keep families on our waiting list and notify them of any future events or opportunities. We appreciate your understanding.
If you are not a member please click the link to join – Become A Member