Upcoming Events
"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. |
Global NCBRS Awareness Day!!!
We we will be celebrating #GlobalNCBRSAwarenessDay on Wednesday, October 9th, 2024. This day is dedicated to raising awareness of Nicolaides-Baraitser Syndrome, a rare genetic condition. Visit our Awareness Day Page where you can learn more about the syndrome and find information on how you can get involved in raising awareness. By participating in #GlobalNCBRSAwarenessDay, you can help us raise awareness for this rare condition and contribute to a better understanding of individuals living with it. |
Event Archive
2021 | NCBRS Christmas Jumper & Socks Day!!!
On Saturday December 4th 2021, we held a Virtual NCBRS Christmas Jumper & Sock day. Individuals, families, business and more were encouraged to wear their Christmas jumpers and socks and make a donation to light up our virtual page. Thank you to all who supported and made a donation. We are truly grateful for all your support. |
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2021 | Fitness FUNdraiser for NCBRS...
On Saturday, September 25th we held a virtual Fitness FUNdraiser. We had over 100 people donate and participate in the event from around the globe. We would like to say a huge THANK YOU to Antonietta from "abotti with Antonietta" and Jean-Luc & Nick from "The Wellness Warriors" who gave up their time to facilitate and support our Fitness FUNdraiser. It was a great event and everyone had a great time. Thank you to all who got involved and donated… 🧡💚💙🌍💻 |
2021 | Our First Anniversary...
On June 30th 2021 we celebrated the first anniversary of the NCBRS Worldwide Foundation. We would like to let you know a bit about us and what we have achieved in our first year of operation, so please click here to read a statement from our Co-Founders. We cannot thank you enough for all your kindness, encouragement and efforts in supporting us, the NCBRS Worldwide Foundation and all the NCBRS families. Thank You |
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2021 | NCBRS Virtual 5K Walk
To celebrate our one year anniversary on June 30th 2021, we encouraged our families, friends and supporters to get out and walk 5K between June the 1st and 30th. We are so grateful for all the support we have received from around the world. We had over 100 people participating in the event from the UK and as far as Canada, Australia and many more. Check out our slideshow to see some of our participants taking part in the 5K walk. Thank You for all your support. #WalkTogether4NCBRS |
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2018 | NCBRS Meeting | UK
This event was held in June of 2018 at the Premier Inn, Manchester. This was a huge success and we thank the doctors and families involved to make it the success it was. |
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2015 | NCBRS Meeting | Toronto
The event was a huge success. Many thanks to the doctors and all the families that attended. The feedback from all the families was very positive and all said, that not only did they receive lots of information, but also how wonderful it was to be able to connect with each other. PowerPoint presentations: NCBRS | Phenotype | Epilepsy YouTube videos from the event: Part 1 | Part 2 | Part 3 |