Newly Diagnosed Families Weekend | The Haemophilia Society

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.

Please ensure that all newly diagnosed family members who wish to attend the weekend are registered as members of the Haemophilia Society. Membership is a requirement for participation in this event.

Who will be there?

We aim to invite up to 13 families per weekend.

Throughout the weekend, you will meet a range of people involved in bleeding disorders care, including:

clinical nurse specialist
physiotherapist
dentist
social worker
young people living with a bleeding disorder
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.

What happens?

Our NDFW is a very informal event. Some sessions involve talks and presentations, allowing everyone 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.

Breakout sessions also allow parents to talk together or ask professionals about a specific issue. The Society’s Young 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

Childcare is available while you attend the sessions. The team’s diversity and differing experiences mean 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, 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 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 occur in the same building. The location varies year to year.

How long does it last?

Guests can arrive on Friday afternoon. The sessions, in the conference suite, start on Saturday morning and finish around lunchtime on Sunday. Lunch is provided for you and your child/children.

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 weekend places for our newly diagnosed families 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 selected for the event will receive an invitation in due course. We understand this event is important to many families and will do our best to accommodate as many as possible.

If we cannot offer a place for the upcoming event, we will keep families on our waiting list and notify them of future events or opportunities. We appreciate your understanding.

If you are not a member, please click the link to join – Become A Member

Newly Diagnosed Families Weekend - Register Your Interest

Parent's Details

Parent/Guardian 1 - First name

Last name

Parent/Guardian 2- First name

Last name

Contact Details

Email Address

Address line 1

Address line 2 (optional)

Town/City

Postcode

Telephone

Child's Details

First name of the child with a bleeding disorder

Last name of the child with a bleeding disorder
Bleeding Disorder Type and Severity

Date of birth (Day/Month/Year)

Date of diagnosis (Month/Year)

Haemophilia Centre your child/ren attend

Number of siblings attending

Name and date of birth of siblings attending

Do any of the siblings have a bleeding disorder? If yes, please name which siblings and the bleeding disorder they have?

Do any of the your children have SEND (Special Educational Needs and Disabilities) requirements? If yes, please name which child and the SEND?

Are you a member of the Haemophilia Society?
If no, membership is a requirement to attend this event. We cannot add you to our waiting list until those attending register as a member.
YesNo
As a member, we will be added to the waiting list for the Newly Diagnosed Families Weekend. As soon as a place becomes available, we will contact you with the details.
We want to make sure you receive all our communications smoothly, so we recommend adding our email address to your Safe Senders list. This way, you won’t miss any important messages from us.
We appreciate your understanding and continued interest.