💖 Happy Mother’s Day 2026! 💖
Sending the warmest wishes to all the incredible mums in our #NCBRS community celebrating today! 💐 May your day be overflowing with the love and joy you so freely give to others.
Thank you for your tireless advocacy, your strength, and for being the heart of our global NCBRS family. Enjoy every moment of your special day! ✨
#NCBRSRare #MothersDay2026 #RareDiseaseMums 🧡💚💙
We are thrilled to share our latest infographic, a visual representation of the global impact and reach of the Nicolaides-Baraitser Syndrome (#NCBRS) community. With fewer than 340 known cases worldwide, every family connected and every country reached represents a vital step toward a better future for those living with NCBRS.
🌍 A Global Community
This infographic highlights our mission to unite families and researchers across 51 different countries. Whether it’s through supporting 199 males and 135 females currently identified in our network or advocating for better healthcare recognition, our goal remains clear: no family should have to navigate this rare diagnosis alone.
🎯 Our Key Goals
Research: Building patient registries and funding studies into the #SMARCA2 gene (located on chromosome 9).
Support: Providing a global network for families to share experiences and find strength.
Advocacy: Ensuring NCBRS is recognised and understood by healthcare systems globally.
✨ Community Benefits
By working together, we foster Connection, provide Empowerment through clinical information, and fuel Hope for a better quality of life through centralised research efforts.
🙏 A huge thank you to @costellomedicalcreative for their incredible collaboration and expertise in creating this material. This beautiful infographic helps us communicate our mission more effectively to the world... 🧡💚💙
#NCBRSrare #RareDisease #MedicalResearch #StrongerTogether #CostelloMedical
"Going Global" wasn't just a theme—it was a reality! 🌍💙
Relive the incredible moments from the #NCBRS Family Conference USA 2025. From groundbreaking research updates to the simple joy of families connecting under one roof, this video captures the heart of our community.
This milestone event brought together over 140 participants from across the globe, including clinicians, researchers, and - most importantly - our amazing families. Together, we are fueling hope and advancing the future of NCBRS support.
✨ A massive thank you to @costellomedicalcreative for their collaboration and expertise in bringing this video to life. Your support helps us share our story with the world! 🧡💚💙
#NCBRSRare #RareDisease #StrongerTogether #NCBRSUSA25 #CostelloMedical #SMARCA2 #MedicalResearch #RareDiseaseAwareness
A Heartfelt Thank You to Our Community and Partners 💙
We are still buzzing from the incredible energy at the "GOING GLOBAL" NCBRS Family Conference USA 2025! Bringing our community together was a monumental task, and it wouldn't have been possible without the extraordinary support of our partners and volunteers.
🤝 Spotlight on @costellomedicalcreative
A special thank you goes to the team at Costello Medical, both here in the UK and the USA. Their dedication and expertise were instrumental in bringing this conference to life.
Beyond their support during the event, they have been working tirelessly behind the scenes to create high-quality post-conference materials. These resources are vital—they allow us to capture the insights shared by experts and families alike, ensuring that the knowledge gained continues to fuel our advocacy and research efforts. We will be sharing these exclusive materials across our social media channels and on our website. Keep an eye out for: Key takeaways, infographics and Eexpert insights
🌍 Why This Matters
Collaborations like this do more than just power an event; they:
* Bridge the gap between medical professionals and patient families.
*Empower our community with accessible, professional-grade information.
*Strengthen our voice as we advocate for #NCBRS awareness globally.
💬 To Our Families
Thank you for showing up, sharing your stories, and making this community what it is. You are the "why" behind everything we do. We can’t wait to roll out these resources.
#NCBRSRare #NCBRSUSA25 #RareDisease #CostelloMedical #probonowork #PatientAdvocacy 🧡💚💙
Over 8,000 retailers will make a donation to the @NCBRS Worldwide Foundation on your behalf when you shop with them via @easyfundraising .
All the big names like Sainsbury's, M&S, Argos, Just Eat, and more are ready to donate at no extra cost to you.
Plus, sign up to support us before midnight on 3rd May, and we could win a £1,000 donation:
.uk/.../CE994/facebook/
Thank you for your support! 🧡💚💙 #NCBRS #NCBRSRare #GiveBack #EasyFundraising
We are proud to share our latest feature in RARE Revolution insider™!
The @NCBRS Worldwide Foundation is "Putting you in the heart of the rare community" by outlining three vital asks for industry to better serve our ultra-rare population. Our CEO, Lee Reavey, shares his insights on what is needed to move the needle for those living with Nicolaides-Baraitser Syndrome:
1️⃣ Targeted Research Investment.
2️⃣ AI-Driven Communication.
3️⃣ Global Patient Registries.
Huge thanks to the team at @rarerevolutionmagazine for giving us this platform to bridge the gap between our families and the industry partners who can help us find answers.
Read the full deep-dive here: https://lnkd.in/dsU4WFGq
#NCBRS #NCBRSRare #RareRevolution #NicolaidesBaraitserSyndrome #RareDisease #UltraRare #PatientAdvocacy #UnmetNeeds #DrugDiscovery #EpilepsyResearch #RareNeuroDev
Happy National Siblings Day 2026! 🧬💪
Today is all about celebrating the incredible bond shared between siblings, but we want to shine an extra bright spotlight on our NCBRS siblings.
In the rare disease world, siblings are the ultimate teammates. To the brothers and sisters navigating the #NCBRS journey: we see you. We see the way you step up, the way you adapt, and the unique kind of love you pour into your families.
Being a sibling to someone with NCBRS comes with its own set of challenges, but it also builds a level of empathy and strength that is truly world-changing. You aren’t just family; you are essential to our community. Your patience, your advocacy, and your laughs are often the best medicine.
Today, we honour you and the vital role you play in making the #RARE journey a little brighter. Drop a photo of your favourite NCBRS sibling duo in the comments! Let’s celebrate the heart of our community. 🧡💚💙
#ItsASiblingThing #NationalSiblingsDay #NCBRSRare @nicolaidesbaraitser@sibscharity_uk
Wishing a 'Hoppy' Easter to our global #NCBRS community! 🐇🐣✨
To all our NCBRS superstars: may your day be bright, your eggs be easy to find, and your hearts be full. Cheers to a day of celebrating exactly who we are… 🧡💚💙
#NCBRSRare #RareDiseaseFamily #Easter2026 @nicolaidesbaraitser
🐣 Easter Bank Holiday Notice 🐣
The team is signing off for the Easter bank holiday weekend. We’ll be out of the office from Friday, 3rd April, and we'll be back on Tuesday, 7th April.
We’re taking a proper break to recharge, so we won't be checking our emails while we're away. Don't worry, though - we’ll get back to everyone as soon as we're back in action on Tuesday!
We hope you have a wonderful, relaxing break filled with plenty of chocolate! 🍫✨
Happy Easter from the Team! 🧡💚💙
📣 We’re featured on the @uclbrainsciences blog!
The article follows an amazing journey from the very first NCBRS diagnosis to the high-tech labs at UCL, where the team is currently studying the SMARCA2 gene. 🧪
It’s all about collaboration—families, doctors, and scientists joining forces to find answers. We are so proud of Maya and Deepa for sharing their story and showing the world what our community is all about. 🧡💚💙
Follow this link to read the full story: https://buff.ly/k7VDOEK
#NCBRS #NCBRSRare #RareGenetics #CommunityPower #UCL
🌍 We went global—now we’re bringing it home! 🧡💚💙
The energy at the "GOING GLOBAL" NCBRS Family Conference USA 2025 was nothing short of electric. From groundbreaking research updates to the heartfelt connections made in the hallways, this year was a milestone for our community.
Missed a session? Or just want to relive the magic?
✨ The Full Conference Recap is LIVE! ✨
Head over to our website to access:
📹 Presenter Videos: Catch every keynote and scientific session.
📸 Photo Gallery: Relive the smiles, the hugs, and the #NCBRSFamily moments.
📊 Impact Report: See how your presence and support are driving change for Nicolaides-Baraitser Syndrome worldwide.
🔗 /events-familyconference-usa2025archive.html
A huge thank you to our incredible speakers, tireless volunteers, and—most importantly—our families. You are the heart of this mission.
#NCBRS #NCBRSRare #NCBRSUSA25 #GoingGlobal #RareDisease #RareCommunity #ConferenceRecap
💖 Wishing a wonderful Mother’s Day to all the amazing women in our NCBRS family across the UK 🇬🇧 & Ireland 🇮🇪! 💖
Today, we celebrate every woman who pours their heart into our community. Whether you are a mum, step-mum, grandmother, foster mum, godmother, or caregiver, we deeply value everything you contribute to the NCBRS Worldwide Foundation and our global network.
In our rare world, your roles are many—you are the fierce advocates, the expert caregivers, the "inchstone" celebrators, and the keepers of hope. Your dedication is the heartbeat of the NCBRS family.
May your day be filled with love, joy, and the recognition you so truly deserve. 🧡💚💙
#NCBRS #NCBRSRare #MothersDay2026 #RareMoms #MotheringSunday @nicolaidesbaraitser
