El NCBRS es una condición muy rara.
Las famillias con seres queridos diagnosticados, nos unimos para visivilizar, pidiendo conciencia, inclusión educativa, social, salud e investigación. #solossomosrarosjuntossomosfuertes
#NCBRS #nCBRSRare #GlobalNCBRSAwarenessDay 🧡💚💙

Dolandırıcı arkadaşlar dolandırmaya çalıştı dikkat edin gardrops kullanıcı ası ncbrs

I will be speaking at the annual National Healthcare Outcomes Conference on April 16th in RCSI, 26 York St. The theme is 'Improving Health outcomes through AI' where I will be discussing Patient Experiences, questions and concerns.
#NHOC2024 #HORC #RCSI #NCBRS

Great #ESHG2023 talk Hannah Klinkhammer showing GestaltMatcher (.eth) can contribute to lumping vs splitting decisions using #NGP facial phenotype descriptors. Interesting splitting example in (BIS vs NCBRS) SMARCA2 disorders. Intrigued to read your new paper describing ‘gene X’! #ESHG2023

Amazing presentation from Danika price at the Welsh Epilepsy Nurse meeting today - A parents journey of supporting her beautiful little girl through a diagnosis of epilepsy & a rare genetic disorder NCBRS Worldwide Foundation - Nicolaides Baraitser #proudfriend #epilepsy 💜 #ncbrs

NCBRS Worldwide Foundation announces inaugural “UNITED AGAIN” Family Conference – UK 2024.

Read more at bit.ly/3xIPLcS

NCBRS Worldwide Foundation - Nicolaides Baraitser

Who's dazzling today?
Check out these awesome advocates, orgs, and projects!
~🦋
#Dazzle4Rare2023 #RareDisease #WeAreRareFamily
#NCBRS #KaleidoscopeRare #RareDisease Stories #ZebraStrong

The NCBRS Worldwide Foundation supports and educates families, carers, and professionals who work with people diagnosed with Nicolaides-Baraitser Syndrome. We work to promote awareness & understanding of the syndrome #dazzle4rare2023

Thank you NCBRS Worldwise Foundation for sharing our message 🧡
Please see below to find out more about their work!
For more information, visit ncbrs-worldwide-foundation.weebly.com
#Dazzle4Rare #NCBRS #FOPFriends

Our friends @NCBRSFoundation
is creating a Scientific Advisory Board (SAB). The SAB will help the Foundation to fulfil its mission in advocating for scientific research that increases the medical knowledge of NCBRS and best treatments. A great opportunity! #GeneticConditions

So cute, @NCBRS! A great idea too! 💡

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We now have 100+ #NCBRS patients on our global registry. Enrol now at: buff.ly/3GtMHCV. Include SMARCA2, nucleotide change (c.), and protein change (p.). Update your NCBRS persons' data annually by logging in. Thank you for your support! 🧡💚💙 #NCBRS Rare #Research

Time is running out to book your place at our “UNITED AGAIN” - Family Conference - UK 2024.

Booking closes this Friday, 3rd May at 11:59pm BST. We cannot wait to welcome you to our event!

Book here: buff.ly/4cDoLeM… 🧡💚💙 #NCBRS #NCBRS Rare #NCBRS FamilyConference2024

With bookings closed and the conference approaching in just over three weeks, we are excited to welcome our #NCBRS community from nine countries! Get ready for a weekend of unity, learning, and familial bonds! 🧡💚💙 #NCBRS Rare #NCBRS FamilyConference2024

Join us at our upcoming Family Conference. The event focuses on patient care, presentations & networking. Book your spot before it closes today @ 11:59pm - UK time. Learn more here: buff.ly/4cDoLeM #NCBRS #NCBRS Rare #NCBRS FamilyConferenceUK2024.

Thanks for the #RareDiseaseDay #TuesdayTakeover , RARE Revolution Magazine. We hope you enjoyed learning about #NCBRS and our global community at NCBRS Worldwide Foundation - Nicolaides Baraitser. To contact us please email us at: [email protected] or visit ncbrs.com #NCBRS Rare #PatientGroup #RDD #RDD 2024

The NCBRS Worldwide Foundation supports and educates families, carers, and professionals. We work to promote awareness through research, increase the medical knowledge of #NCBRS #NCBRS Rare. #dazzle4rare2023

August 7-13 is all about sharing rare disease information💜
#Sarcoidosis

Carrera - marcha virtual Síndrome Nicolaides-Baraitser (NCBRS) — 321Go 321go.es/Carrera/Detail…

A #Dazzle4Rare2023 Shoutout to #RareDisease #Charity
The @NCBRSFoundation supports and educates families, carers, and professionals who work with people diagnosed with #Nicolaides_Baraitser Syndrome.  #NCBRS

Échale un vistazo a Carrera - marcha virtual Síndrome Nicolaides-Baraitser (NCBRS) en 321Go Eventos: 321go.es/Carrera/Detail…