"united again" - Family conference - uk 2024
The NCBRS Worldwide Foundation is delighted to extend an invitation to the first Family Conference following the establishment of the Foundation in 2020.
At the heart of the conference will be families, with a strong emphasis on patient care to address the questions and concerns of the families we support.
The conference will feature presentations from NCBRS Board Members and NCBRS Scientific Advisory Board Members and a panel discussion to answer your questions.
The event will also offer:
We look forward to welcoming you to... Premier Inn, London Heathrow!
At the heart of the conference will be families, with a strong emphasis on patient care to address the questions and concerns of the families we support.
The conference will feature presentations from NCBRS Board Members and NCBRS Scientific Advisory Board Members and a panel discussion to answer your questions.
The event will also offer:
- Meet and Greet' on Friday evening.
- Opportunities to forge new connections and reunite with old friends.
- FRIENDSPACE: a dedicated area for children and young people to enjoy activities, snacks, and drinks during the presentations.
- Family Dinner on Saturday evening.
We look forward to welcoming you to... Premier Inn, London Heathrow!
Proposed Conference Agenda
Friday:
*DINNER ON THE FRIDAY EVENING IS AT THE EXPENSE OF THE ATTENDEE/S.*
Saturday:
*BREAKFAST ON THE SATURDAY MORNING IS AT THE EXPENSE OF THE ATTENDEE/S.*
Sunday:
*THIS IS AN OPTIONAL FAMILY DAY OUT TO LEGOLAND - FAMILIES WILL NEED TO COVER THE COST OF THIS ACTIVITY, ANY FOOD AND DRINKS, INCLUDING BREAKFAST AT THE HOTEL.*
*THE FULL AGENDA IS STILL IN THE DRAFT STAGE SO IS SUBJECT TO CHANGE. ONCE THE AGENDA IS FINALISED IT WILL BE SHARED HERE AND SENT TO ALL ATTENDEE/S.*
Friday:
*DINNER ON THE FRIDAY EVENING IS AT THE EXPENSE OF THE ATTENDEE/S.*
- Arrive at the hotel late afternoon/early evening (after 3pm).
- 6-8pm Meet and Greet (Register & pick up delegate bag).
Saturday:
*BREAKFAST ON THE SATURDAY MORNING IS AT THE EXPENSE OF THE ATTENDEE/S.*
- Conference (funded by the Foundation).
- FRIENDSPACE (childcare, provided by Creche My Party and funded by the Foundation).
- Lunch (funded by the Foundation).
- Group photo.
- Evening dinner (funded by the Foundation).
Sunday:
*THIS IS AN OPTIONAL FAMILY DAY OUT TO LEGOLAND - FAMILIES WILL NEED TO COVER THE COST OF THIS ACTIVITY, ANY FOOD AND DRINKS, INCLUDING BREAKFAST AT THE HOTEL.*
- Travel to Legoland from hotel.
- Explore Legoland as a group or with own family.
- Meet for lunch (Families to cover these costs),
- Continue exploring Legoland.
- 5pm - Leave Legoland or earlier.
*THE FULL AGENDA IS STILL IN THE DRAFT STAGE SO IS SUBJECT TO CHANGE. ONCE THE AGENDA IS FINALISED IT WILL BE SHARED HERE AND SENT TO ALL ATTENDEE/S.*
Conference Pricing and Booking
Conference fees: We are pleased to offer this event FREE OF CHARGE to our NCBRS patients and their parents and siblings (immediate family only). Other family members are welcome to attend but there will be a small fee of:
This fee covers childcare costs, lunch and dinner on Saturday evening.
To book your conference place/s, please use the form below:
*BOOKING CLOSES ON FRIDAY, 3RD MAY 2024 AT 11:59PM, SO BOOK YOUR PLACE/S TODAY.*
Conference fees: We are pleased to offer this event FREE OF CHARGE to our NCBRS patients and their parents and siblings (immediate family only). Other family members are welcome to attend but there will be a small fee of:
- Adults (16+) = £50pp
- Children (0-15 years) = £25pp
This fee covers childcare costs, lunch and dinner on Saturday evening.
To book your conference place/s, please use the form below:
*BOOKING CLOSES ON FRIDAY, 3RD MAY 2024 AT 11:59PM, SO BOOK YOUR PLACE/S TODAY.*
FRIENDSPACE- Childcare
We want parents and family members to be able to relax and engage with our event programme knowing your child/young person is safe, looked after and happy. That is why we are pleased to offer the FRIENDSPACE for up to 15 children/young people (under 12's) from 8:30am until 12:30pm. The children/young people will then join us for the afternoon.
The childcare will be provided by the event childcare company “Creche My Party”. They will deliver a safe and stimulating play space at the conference. They will provide a selection of age-appropriate toys, a range of board games and table top games, and a no mess arts and crafts table with lots to do such as mask making, badge making, sticker art, colouring and lots more to keep children engaged and amused.. We know the children and young people will be in great hands. All event childminders are DBS-checked. There will be a Creche leader and at least one trained paediatric first aider.
To book your child/young person into the FRIENDSPACE please email: [email protected] and mention you are attending the NCBRS Family Conference - UK 2024. They will then send you a "Booking Form" to complete (the booking form contains information that they need to ensure they have the correct ratio of staff to care for the ages and number of children booked in). Once they have received your completed booking form they will confirm your booking at the FRIENDSPACE and with us.
*SPACES FOR THE FRIENDSPACE ARE LIMITED TO 15 PLACES AND BOOKING CLOSES ON FRIDAY 3RD MAY 2024 AT 11:59PM, SO PLEASE BOOK AS SOON AS POSSIBLE.*
*PLEASE NOTE, THE FRIENDSPACE WILL BE HELD IN A SEPARATE ROOM. YOU WILL BE ABLE TO CHECK IN ON YOUR CHILD/YOUNG PERSON WHEN YOU LIKE AND THE CHILDCARE STAFF WILL BE ABLE TO COME AND GET YOU IF THERE ARE ANY ISSUES.*
We want parents and family members to be able to relax and engage with our event programme knowing your child/young person is safe, looked after and happy. That is why we are pleased to offer the FRIENDSPACE for up to 15 children/young people (under 12's) from 8:30am until 12:30pm. The children/young people will then join us for the afternoon.
The childcare will be provided by the event childcare company “Creche My Party”. They will deliver a safe and stimulating play space at the conference. They will provide a selection of age-appropriate toys, a range of board games and table top games, and a no mess arts and crafts table with lots to do such as mask making, badge making, sticker art, colouring and lots more to keep children engaged and amused.. We know the children and young people will be in great hands. All event childminders are DBS-checked. There will be a Creche leader and at least one trained paediatric first aider.
To book your child/young person into the FRIENDSPACE please email: [email protected] and mention you are attending the NCBRS Family Conference - UK 2024. They will then send you a "Booking Form" to complete (the booking form contains information that they need to ensure they have the correct ratio of staff to care for the ages and number of children booked in). Once they have received your completed booking form they will confirm your booking at the FRIENDSPACE and with us.
*SPACES FOR THE FRIENDSPACE ARE LIMITED TO 15 PLACES AND BOOKING CLOSES ON FRIDAY 3RD MAY 2024 AT 11:59PM, SO PLEASE BOOK AS SOON AS POSSIBLE.*
*PLEASE NOTE, THE FRIENDSPACE WILL BE HELD IN A SEPARATE ROOM. YOU WILL BE ABLE TO CHECK IN ON YOUR CHILD/YOUNG PERSON WHEN YOU LIKE AND THE CHILDCARE STAFF WILL BE ABLE TO COME AND GET YOU IF THERE ARE ANY ISSUES.*
Accommodation and Extras
Again we are pleased to offer accommodation to our NCBRS patients and their parents and siblings (immediate family only), FREE OF CHARGE. Other family members are welcome to stay but will need to pay for and book their own accommodation.
We are asking all our families to BOOK and PAY for their accommodation at the standard rate and if only when in attendance at the conference this will be reimbursed with proof of purchase (you can get a printed copy from reception when you check in).
*PLEASE NOTE, THERE ARE FLEXIBLE OPTIONS AVAILABLE BUT WE WILL ONY REIMBURSE FOR ONE ROOM (MAX 4 PEOPLE) FOR 2 NIGHTS (MAX £160) AT THE STANDARD RATE. ANY ADDITIONAL EXPENSE OR ADDITIONAL NIGHTS ARE AT THE EXPENSE OF THE ATTENDEE/S.*
Hotel rooms: To book your accommodation at the Premier Inn, please click the button below:
Again we are pleased to offer accommodation to our NCBRS patients and their parents and siblings (immediate family only), FREE OF CHARGE. Other family members are welcome to stay but will need to pay for and book their own accommodation.
We are asking all our families to BOOK and PAY for their accommodation at the standard rate and if only when in attendance at the conference this will be reimbursed with proof of purchase (you can get a printed copy from reception when you check in).
*PLEASE NOTE, THERE ARE FLEXIBLE OPTIONS AVAILABLE BUT WE WILL ONY REIMBURSE FOR ONE ROOM (MAX 4 PEOPLE) FOR 2 NIGHTS (MAX £160) AT THE STANDARD RATE. ANY ADDITIONAL EXPENSE OR ADDITIONAL NIGHTS ARE AT THE EXPENSE OF THE ATTENDEE/S.*
Hotel rooms: To book your accommodation at the Premier Inn, please click the button below:
- Double room (double occupancy): £155
- Twin room (triple occupancy): £155
- Family room (x2 adults & x2 children occupancy): £155
*PRICES CORRECT ON: 27/03/24 AND ARE BASED ON TWO NIGHTS.*
Additional Options (at attendee/s expense)
Breakfast
From just £9.99 per adult, you can have an all-you-can-eat Premier Inn Breakfast. Plus, when an adult orders a Premier Inn Breakfast, up to two kids eat breakfast for free!
Meal Deals
Save up to 20% on Premier Inn’s Meal Deal which lets you enjoy a delicious two-course evening meal, a selected drink and an all-you-can-eat Premier Inn Breakfast, all from just £24.99.
Legoland - Windsor
This is an OPTIONAL family day out to LEGOLAND - Families will need to cover the cost of this activity, any food and drinks, including breakfast at the hotel.
Please click on each tab for more information!
This is an OPTIONAL family day out to LEGOLAND - Families will need to cover the cost of this activity, any food and drinks, including breakfast at the hotel.
Please click on each tab for more information!
Entry
If you are planning on joining us for this OPTIONAL day out at Legoland - Windsor, then it is best to pre-book your tickets online. Entry to Legoland will cost sufficiently more at the gate.
You can claim a free Carer’s ticket if you can show documentation for proof of disability. CLICK HERE to view the types of documentation accepted.
To book your free Carer’s ticket, please CLICK HERE.
- Online Price: Adult (16+) = £45.00
- Online Child (90cm - 15 Years) = £45.00
You can claim a free Carer’s ticket if you can show documentation for proof of disability. CLICK HERE to view the types of documentation accepted.
To book your free Carer’s ticket, please CLICK HERE.
RIDE Access pass
The Ride Access Pass (RAP) is a system in place to help guests who require additional support or are unable to queue due to a condition or disability. This allows access to the rides via a queuing system for themselves and up to three people (one of which must be age 14+).
The Ride Access Pass removes the need for guests to wait within the main ride queue lines, and enter by a dedicated entrance for Ride Access Pass users.
For more information and to apply for a Ride Access Pass, please CLICK HERE.
The Ride Access Pass removes the need for guests to wait within the main ride queue lines, and enter by a dedicated entrance for Ride Access Pass users.
For more information and to apply for a Ride Access Pass, please CLICK HERE.
parking
Standard parking is £8, you will need to pay for this even if you have a Blue Badge, please CLICK HERE.
Travel Information
Attendees are responsible for paying for their own travel. As the price for attending the conference and accommodation has been heavily subsidised for patients and their families, the NCBRS Worldwide Foundation is unable to offer any travel subsidies/reimbursements to families/attendees.
Please click on each tab for more information!
Attendees are responsible for paying for their own travel. As the price for attending the conference and accommodation has been heavily subsidised for patients and their families, the NCBRS Worldwide Foundation is unable to offer any travel subsidies/reimbursements to families/attendees.
Please click on each tab for more information!
by plane
Flying into London Heathrow Airport? The hotel is 2.5 miles from Terminal 2&3, 3.5 miles from Terminal 3 and 4 miles from Terminal 5. From there you can either take a bus or a taxi.
by train
The closest train station to Premier Inn - London Heathrow, Bath Road is Hounslow West Station. From there take the H98 (stop C) towards Hayes End, get off at Oxford Avenue (stop H) and the hotel will be in front of you.
by car
From M4(J3) - Follow Heathrow signs A312. At Waggoners roundabout turn right into Bath Road. After 1/2 mile the hotel is on the left.
Parking
Chargeable on-site parking is available at £15 per 24 hours. Parking is managed by Horizon. Please pay for this at Reception on arrival.
Airport parking is available through Premier Inn‘s partner Holiday Extras at great prices.
Airport parking is available through Premier Inn‘s partner Holiday Extras at great prices.
Sponsor Our Event
Could you sponsor our event? Your support would mean the world to us and would play a vital role in
ensuring that our attendees have a memorable and enjoyable experience. By sponsoring us, you will not only be making a positive impact on the event but also showcasing your dedication to our rare community.
Your involvement as a sponsor will be acknowledged in various ways, including being featured in our event brochure and promoted on our social media platforms. This will provide you with valuable exposure and the chance to connect with our diverse audience.
If you are interested in joining us as a sponsor to help us achieve our goals, please reach out to us on: [email protected]. We’re looking forward to the opportunity to work hand in hand with you to make our event a resounding success.
Could you sponsor our event? Your support would mean the world to us and would play a vital role in
ensuring that our attendees have a memorable and enjoyable experience. By sponsoring us, you will not only be making a positive impact on the event but also showcasing your dedication to our rare community.
Your involvement as a sponsor will be acknowledged in various ways, including being featured in our event brochure and promoted on our social media platforms. This will provide you with valuable exposure and the chance to connect with our diverse audience.
If you are interested in joining us as a sponsor to help us achieve our goals, please reach out to us on: [email protected]. We’re looking forward to the opportunity to work hand in hand with you to make our event a resounding success.
Terms & Conditions
CANcellations
We will do our best to ensure that the conference goes ahead, but we reserve the right to cancel at any time. If we do, we will refund your conference fee (if any) in full but will have no further liabilities to you. In particular, we will not meet the costs of any pre-booked accommodation or travel. However, where we are forced to cancel the conference as a result of events arising which are outside of our control, we will have no obligation to offer a refund of your conference fee. If you wish to cancel your attendance at the conference you must do so by emailing: [email protected]
CHANGES TO THE AGENDA
Although we will do our best to follow the published programme, we reserve the right to change it (including the guest speakers and the times of any presentations). In the unlikely event that we need to change the venue, we will give you as much notice as is practicable. In the event that any such changes are made, no refund of the conference fee shall be made.
speakers
The views expressed by speakers/guest speakers are theirs alone and do not necessarily represent the views of the NCBRS Worldwide Foundation. We can take no responsibility for the content or the accuracy of the speakers' presentations. The NCBRS Worldwide Foundation does not endorse any clinical trial or pharmaceutical company.
MArketing, filming and social media
There will be a professional photographer and/or video production taking place during the conference which may be used for future marketing and promotional purposes. By attending the event you are accepting that if a photograph or video footage is taken of you at the event, The NCBRS Worldwide Foundation owns the right to use the photo for any purpose they see fit.
It is not permitted for any conference attendee to film or record any session at the event either for their own purposes or to stream online without express permission from the NCBRS Worldwide Foundation prior to the conference. Anyone seen to be doing this may be asked to leave the event with no refund available.
As this is a rare patient group event, a high level of confidentiality and privacy is expected and required from all attendees. Any social media posts must be carried out with this in mind and we ask that you do not post images/videos containing other delegates without their express permission.
It is not permitted for any conference attendee to film or record any session at the event either for their own purposes or to stream online without express permission from the NCBRS Worldwide Foundation prior to the conference. Anyone seen to be doing this may be asked to leave the event with no refund available.
As this is a rare patient group event, a high level of confidentiality and privacy is expected and required from all attendees. Any social media posts must be carried out with this in mind and we ask that you do not post images/videos containing other delegates without their express permission.
liability
We will accept no liability for illness and/or injury or for the loss or damage of your personal property at the conference.
governing law
These Terms and Conditions shall be governed by and construed in accordance with English law and the parties irrevocably agree to submit to the exclusive jurisdiction of the courts of England over any claim or matter arising under or in connection with these Terms and Conditions. Attendees will be expected to comply with these Terms and Conditions, the rules of the venue and the reasonable requests of the organisers. The failure of attendees to do so will entitle us to cancel or terminate your attendance at the conference.
conference organisers
This event has been brought to you by the Trustees and Scientific Advisory Board Members of the NCBRS Worldwide Foundation.
If you would like any additional information regarding this event, need help registering or would like to sponsor our event, then please reach out to us on: [email protected].
We cannot wait to welcome you to the... "UNITED AGAIN" - FAMILY CONFERENCE - UK 2024!
We cannot wait to welcome you to the... "UNITED AGAIN" - FAMILY CONFERENCE - UK 2024!