NCBRS Worldwide Foundation - Nicolaides Baraitser
@ncbrsfoundation
Our aim is to help families by providing practical advice, annual conferences, raising awareness of #NCBRS and possibly help to fund any future research studies
We're 5! 🎉 The @NCBRSFoundation celebrates 5 years of global impact, unity & hope. 🌍💙 🧩 1st in-person conference 🌱 New US event coming soon 💡 Advocacy, research, support 💬 Read our full statement: buff.ly/ChzDLJ8 #NCBRS #NCBRSRare #5YearAnniversary
We’re overwhelmed (in the best way!) by the response to the #NCBRS2025 Family Conference! 🌍 📍 Malvern, PA | 🗓️ Oct 10–12 ✔️ Global community ✔️ Expert speakers ✔️ Kids’ activities 👉 Register here: buff.ly/2831Q7t
Happy Father’s Day to all our amazing #RareDads, Stepdads, Grandads, and Father Figures! We are celebrating your incredible influence in our #NCBRS community. Your support and kindness make a real difference. Thank you. Enjoy your day! 🧡💚💙 #NCBRS #NCBRSRare #FathersDay2025
💰 NCBRS Conference Fees: Patients & immediate family: FREE Others: Adults $89, Children $62 Booking closes Sept 1st, 2025 🔗 Reserve your place here: buff.ly/D70DIoj #NCBRS #NCBRSRare #NCBRSUSA25 🧡💚💙
Raise BIG donations up to £150 when purchasing insurance, broadband & TV, upgrading your mobile, or investing in ISAs. Companies like MoneySupermarket, BT Broadband & giffgaff will donate to us for FREE! Visit: buff.ly/O0vlY7z Thank you for your support... 🧡💚💙 #NCBRS
🌍 "Going Global" Family Conference USA 2025 🌍 🎉 FriendZone: A fun space for kids during the NCBRS Conference. Activities, snacks, and more! Learn more: buff.ly/D70DIoj #NCBRS #NCBRSRare #NCBRSUSA25
Join us for the 🌍 Going Global! 🌍 NCBRS Family Conference in Malvern, Pennsylvania, USA, from October 10–12, 2025. Learn more and book your spot today: buff.ly/C6vgbv9... We look forward to seeing you in the USA! 🧡💚💙
The team at the @NCBRSFoundation is taking a well-deserved break over the May bank holiday. We will be closed from today, and we will reopen tomorrow. If you need to reach out to us email: [email protected]. Wishing everyone a great bank holiday... #NCBRS #NCBRSRare
🌍 We’re Going Global! 🌍 Join us for the NCBRS Family Conference in Malvern, Pennsylvania, USA, from October 10–12, 2025. Learn more and book your spot today: buff.ly/VM9hySI... We look forward to seeing you in the USA! 🧡💚💙
Have you signed up for the 'This Is Me' #RarePatientPassport yet! Make sure you choose @NCBRSFoundation for your condition-specific passport. Sign up here: buff.ly/xcjdvt5 🧡💚💙 #NCBRS #NCBRSRare @CamRareDisease
The team at the @NCBRSFoundation is taking a well-deserved break over the early May bank holiday. We will be closed from today, and we will reopen tomorrow. If you need to reach out to us email: [email protected]. Wishing everyone a great bank holiday... #NCBRS #NCBRSRare
Our supporter, Wesley Smith is tackling the Isle of Wight 108km Ultra Challenge, a 24-hour trek with 1600m elevation, to raise £5,000 for us, ahead of his Everest Base Camp climb. Support him here: buff.ly/JoioMXO Thank you Wes. 🧡💚💙 #NCBRSRare #NCBRS #UltraChallenge
Nominate us for a 5K donation from @BenefactGroup #MovementForGood Health & Wellbeing Draw. Your nomination could secure this donation for our 2025/26 events. Nominate here: buff.ly/xWRZ6iU by 4th May (our details are pre-filled). Thank you. #NCBRS #NCBRSRare 🧡💚💙
Today’s #NCBRSBirthdayStar is Harley from the UK 🇬🇧, celebrating his 20th birthday. Diagnosed with #NCBRS at age 3 in 2008, this was later confirmed through WES in 2012 when the SMARCA2 gene was identified. Read Harley's story here → buff.ly/44es08z #NCBRSRare 🧡💚💙
