NCBRS Worldwide Foundation - Nicolaides Baraitser
@ncbrsfoundation
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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
Worldwide
Joined October 2018
🚨 1 WEEK LEFT! 🚨. Time is running out to register for the "GOING GLOBAL" NCBRS Family Conference USA 2025. Registration closes Sept 1st! 💙. 👉 Secure your spot now: We're looking forward to welcoming you. 🧡💚💙 #NCBRS #NCBRSRare #NCBRSUSA25
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The team at the @NCBRSFoundation is taking a well-deserved break over the summer bank holiday. We will be closed today, and we will reopen tomorrow. If you need to reach out to us email: contactus@ncbrs.com. Wishing everyone a great bank holiday. #NCBRS #NCBRSRare
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📣 Only 10 days left to save your spot!.Registration for the “GOING GLOBAL” NCBRS Family Conference USA 2025 closes September 1st. ✨ Have you registered yet? Don’t wait!.👉 We can’t wait to see to you there… 🧡💚💙 #NCBRS #NCBRSRare #NCBRSUSA25
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Absolutely incredible effort, Wesley! From late-night Loch Lomond dips to climbing Britain’s peaks, your dedication inspires us. Thanks to everyone who supported and donated—your help makes a difference. Rest up, Wesley—Everest awaits! #TeamNCBRS #NCBRS #NCBRSRare
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💰 #NCBRS Conference Fees:.Patients & immediate family: FREE.Others: Adults $89, Kids: $62.📅 Booking deadline: September 1st, 2025, at 11:59 PM EDT.🔗 Book your place today! 👉 Looking forward to welcoming you. 🧡💚💙 #NCBRSRare #NCBRSUSA25
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It’s day 6 of #Dazzle4Rare2025. As we approach the end of this amazing cross community event we are re-sharing the messages from the other participants in our #Dazzle4Rare family. Check out our reel… 🧡💚💙
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For more info on what’s going to be on, and to join @camraredisease at #RARESummitt25 visit their website. #RAREsummit #RareDisease #RareConditions #charities #conference #PatientGroups #PatientLed #PatientOrganisations #Charity.
camraredisease.org
RAREsummit25 by CamRARE is a leading rare disease innovation event uniting patients, researchers, industry, and policymakers to drive progress in rare disease diagnosis, care, and treatment. Join us...
Shout out to our fabulous #RAREsummit25 media partners. @RareRevolutionM.@ncbrsfoundation.@CHCharityUK.@NF2BioSolutions. for spreading the word about our exciting rare patient centred event in Cambridge on 6 Nov 2025!.#RareDisease #RareConditions
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Support @NCBRSFoundation while shopping online at 8,000+ retailers! Sign up for free on @EasyUK through and you'll get a £5 bonus after your first £5 raised. Thank you for your support! 🧡💚💙 #NCBRS #NCBRSRare #FreeDonations #GiveBack #EasyFundraising
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🧡💚💙 #NCBRS #NCBRSRare #Dazzle4Rare #Dazzle4Rare2025 #RareDiseaseAwareness #PatientAdvocates #PatientGroups #WorkTogether #StrongerTogether.
@ataxia_and_me are based in #Wales with a #Global following #FindYourPower #Ataxia awareness project powered by Checkout our #SocialMedia channels to find out more. #StrongerTogether #RareDisease .#Health.#Dazzle4Rare #Dazzle4Rare
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🧡💚💙 #NCBRS #NCBRSRare #Dazzle4Rare #Dazzle4Rare2025 #RareDiseaseAwareness #PatientAdvocates #PatientGroups #WorkTogether #StrongerTogether.
#Dazzle4Rare2025 next is GYNCSM @gyncsm #gyncsm is a community for those impacted by gynecologic cancers, established August.2013. Moderators are @womenofteal. #Dazzle4Rare
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🧡💚💙 #NCBRS #NCBRSRare #Dazzle4Rare #Dazzle4Rare2025 #RareDiseaseAwareness #PatientAdvocates #PatientGroups #WorkTogether #StrongerTogether.
#Dazzle4Rare2025 Metabolic Support UK helps raise awareness of rare conditions, like Inherited Metabolic Disorders. You can learn more about IMDs and what Metabolic Support UK do via the website:.@metabolicsupportuk #Dazzle4Rare
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🧡💚💙 #NCBRS #NCBRSRare #Dazzle4Rare #Dazzle4Rare2025 #RareDiseaseAwareness #PatientAdvocates #PatientGroups #WorkTogether #StrongerTogether.
#Dazzle4Rare2025 raising awareness of Pitt-Hopkins syndrome among health professionals, supports families of both adults and children with PTHS while delivering up-to-date information and supporting research @PittHopkinsUK.
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@dazzle4rare @IFAiArthritis @Ataxia_and_Me @BarbyIngle @globetrotteri @FibroFlutters @GoPI3Ks @gracefully_jen @hesaonlineinfo @rarerevolutionm @rarespecialpowers @rare_youth_revolution @spasticworld @wapo_org @iPainOfficial @unitedadvocacy @kaleidoscoperare @mygeneticmeds @buttahflyk @my_spoonie_sisters @ncbrsfoundation @rarepatientvoic
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We hope you have learnt more about us and the work we do to support our global #NCBRS family as part of #Dazzle4Rare2025 week. Visit our website to continue learning more: Check back tomorrow as we continue to #Dazzle4Rare. 🧡💚💙
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