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
ID: 1050638514428162049
https://linktr.ee/ncbrsworldwidefoundation 12-10-2018 06:45:16
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Carrie Kellenberger - SpA & Fibro Advocate
@globetrotteri
๐ฉโ๐ฆผ 9 biologics later ๐จ Artist & Author ๐ฆ I write about #Disability #Arthritis #axSpA #Fibromyalgia #ME #ChronicPain ๐ค @spondylitis @teamfibro
FEDER | Enfermedades Raras
@feder_ong
๐๐ป Somos la esperanza de 3 millones de personas con #enfermedadesraras ๐ Representamos a 422 organizaciones de pacientes y a 1.546 patologรญas poco frecuentes
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Unique
@unique_charity
Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner.
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
UCL News
@uclnews
News/media from UCL, updated by UCL Media Relations. Follow @ucl for highlights of UCL life & @uclevents
Judy-The United Advocate
@unitedadvocacy
@IF_AIArthritis Rep, Aussie w/RA, PMR,Fibro & Migraine. @IPainFoundation patient partner, Amb4 @Curearthritis,@savvy_coop Pioneer & a @CMAware Advocate #CMARMS
KerriEngebrecht
@kerri0413
Advocate for adrenal insufficiency, Addison's Disease, Pediatric COPD, FTD, PNES, FND, & metal health. #igavebirtomyheroes Wife to the 1 who supports my dreams!
University Nicosia
@unic_eng
Official Twitter account of the largest university in Cyprus, with students and faculty from across the globe. #UniversityOfNicosia #UNIC #ThinkBig
UCL Alumni
@uclalumni
Sharing stories from and for @UCL's global alumni community - one of the world's biggest and best social and professional networks!
christina ๐ฐ๐ช
@cmutena
Here to leave the world better than I found it .. ๐ป๐ท
Joanne Hammett
@liloldme143
CNS in Epilepsy. LD Nurse working in the Learning Disabilities Epilepsy Specialist Service, Swansea Bay HB. Views are my own.
Geraint Rees
@profgeraintrees
UCL Vice-Provost (Research, Innovation & Global Engagement). Husband, dad, doctor, professor, runner. Not necessarily in that order
IOE, UCL's Faculty of Education & Society
@ioe_london
We are @ucl's world leaders for research and teaching in education, culture, psychology and social science. We create lasting and evolving change. #WeAreIOE
Anthony Smith
@anthonysmithvp
Professor emeritus @UCL Former Vice-Provost. Tweets my own.
Global Reg Services
@global_reg_svcs
Passionate about all things regulatory within the Life Sciences. What's the best regulatory pathway to market? We'll show you the way & have some fun too!
UCL Engineering
@uclengineering
The Engineering Faculty of UCL - making things work, making things work better, making sparks. Changing the world. ๐
UCL
@ucl
Sharing highlights of life at UCL (University College London), Londonโs leading multidisciplinary university. Follow @uclnews and @uclevents.
UCL Innovation & Enterprise
@uclenterprise
We work with @UCL staff, students and businesses to turn knowledge and ideas into solutions that benefit us all. On LinkedIn: UCL Innovation & Enterprise
UCL Brain Sciences
@uclbrainscience
@UCL Faculty of Brain Sciences is a global leader in research and education into the mind and brain. Follow us also on instagram.com/uclbrainsciencโฆ
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Tytina Sanders-Bey
@thatmskizzy
#parent CLC~Doula #socialjusticeadvocate #birthworker #chronicallyill since 2019 #nutcrackersyndrome #pelviccongestionsyndrome fighting to get my health back
MPS Society UK, here for those with rare diseases
@mpssocietyuk
MPS Society UK is the only registered charity providing professional support to those affected by MPS, Fabry and related diseases.
amy mctague
@a_mctague
childhood epilepsy clinician scientist Great Ormond Street UCL Institute of Child Health. All views my own
University of Nicosia Medical School
@unic_med
This is the official Twitter Account of the University of Nicosia Medical School. The first Medical School in Cyprus #UNICMed .
Genomics Education
@genomicsedu
NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
Carine De Marcos
@carinedml
Cell Biology, Biochemistry, Drug discovery and Delivery.... (views my own)
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
Carole Sian
@scrufton73
@FibroFlutters #patientspeaker #ChronicIllness #ChronicPain #hEDS #MentalHealth #IBS #rare #ZebraStrutters #patientengagement MYH11 & TNFRSF13B gene mutations
Patient Chat
@patientchat
Join the Empowered #patientchat discussions bi-weekly on Fridays at 10amPT | 1pmET. All welcome. Hosted by @power4patients #epatient #ptexp #patientadvocacy
Healx
@healx
AI-powered and patient-inspired. We accelerate the discovery and development of #raredisease treatments.
Alice Knows Chronic
@smalltownbusy
Fibromyalgia, New Diagnosis of AxSpa, RA warrior, Autoimmune Disability Advocate, Pain Fighter, Mental Health Comrade, Love my #chihuahua #spoonie
Danika price
@danikajoannem
Don't dwell on the past the future is too precious to be wasted!
Spastic Paraplegia Foundation #hspandpls
@spasticworld
Hereditary Spastic Paraplegia #hsp & Primary Lateral Sclerosis #pls together we are #HSPandPLS
UCL Queen Square Institute of Neurology
@uclion
Our mission is to translate neuroscience discovery research into treatments for patients with neurological diseases. Follow us also uclqsion.bsky.social
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrarโฆ
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
HESA Online
@hesaonlineinfo
๐๐ง๐ค๐ซ๐๐๐๐ฃ๐ ๐ฅ๐๐ฉ๐๐๐ฃ๐ฉ ๐จ๐ช๐ฅ๐ฅ๐ค๐ง๐ฉ ๐ฉ๐ค, ๐ฅ๐ช๐๐ก๐๐ ๐๐ฌ๐๐ง๐๐ฃ๐๐จ๐จ ๐ค๐, & ๐ข๐๐๐๐๐๐ก ๐ง๐๐จ๐๐๐ง๐๐ ๐๐ค๐ง ๐๐/๐๐๐๐ผ๐ & ๐๐ผ๐
SamebutDifferent
@sbdrareproject
Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
MyGene2
@mygene2
mygene2.org - Uniting families, clinicians, and researchers for rare disease discovery
BPNA
@bpna_org
Professional association for doctors who specialise in the care of children with neurological disorders. Working to improve the care of children
WAPO
@wapo_org
WAPส is a non-profit organization created in order to unite the international pituitary patient community
dazzle4rare
@dazzle4rare
Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our ๐ linktr.ee/dazzle4rare
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Ataxia and Me CIO 1184030
@ataxia_and_me
#Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.๐
ERDERA
@erdera_org
The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
GoPI3Ks (Genetic Overgrowth PI3K Support)
@gopi3ks
A UK registered charity (1176289) for those living with PROS (PIK3CA Related Overgrowth Spectrum)
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 ๐ฆ
Cure HSPB8
@curehspb8
The only patient advocacy group focused on HSPB8 Myopathy. On a mission to find treatments and cures, raise awareness and build a strong community.
Rareatives
@rareatives
Share Your Rare | Amplifying Rare Disease Voices ๐๏ธ ๐ Sharing stories from the 1 in 10 ๐งฌ New patient-led publication #RareDisease #PatientVoicesMatter
Krzysztof Potempa
@braincures
Founder & CEO @BRAINCURESLtd and dreamster dedicated to prevention and treatment of mental health disorders that affect at least 1 in 6 people worldwide
Ron Jortner
@ronijort
BRAINCURES LTD
@braincuresltd
London based data analytics company that enables at least 6 fold higher clinical success rates and shortens development life cycles by at least 4 years
Cure GABA A
@curegabaa
Our non-profit organization, Cure GABA A Variants, has been focusing on groundbreaking research for the various GABA-A Variants.
Rare Disease Research Partners
@rd__rp
Rare Disease Research Partners support research and access to treatment for people living with rare conditions. Serving rare disease communities.
The Neurogenetics Lab ION
@ionsynapse
The Neurogenetics lab @UCLION led by Prof Henry Houlden is dedicated to discovering new genes and disease mechanisms linked to neurological disorders
Stephanie Efthymiou, PhD AFHEA๐จ๐พ๐ฌ๐ง
@stephanieefthy1
@ICGNMD Post-doc Fellow at Queen Square. Proud member of the Houlden lab @IonSynapse Leventis Scholar Passionate about EDI ๐๐ปโโ๏ธ๐๐ฝโโ๏ธโ๐ฟโ๐ฝโ๐ป๐โฟ๏ธ
FutureNeuro Centre
@futureneuro_ie
FutureNeuro is the @Researchirel Centre for Translational Brain Science, hosted by @RCSI_Irl
The Orphan Disease Center @ UPenn
@odc_upenn
orphandiseasecenter.med.upenn.edu
Patient Partners Innovation Community
@ppic_online
Carefree
@carefreespace
Award-winning charity using digital innovation to transform vacant accommodation into vital breaks for unpaid carers.
The Festival of Genomics & Biodata
@fogenomics
The UK's largest Genomics event is coming to Boston MA on June 24 - 25th. The next Festival of Genomics & Biodata in London will be on 28th & 29th January 2026.
White Swan
@whiteswan4good
White Swan is a registered charity in England and Wales (1176486) aiming to improve health and well being through technology and analytics.
Ataxia Support
@ataxiasupport
Hoping to provide support to those with ataxia. In memory of Rick and Shantel who were taken away from us much too soon by this deadly disease.
Support Cambridgeshire
@supportcambs
Your county, your voice, our support. We support voluntary and community organisations in Cambridgeshire.
Trustee Leadership Programme
@trusteeleaders
Weโre one of the UKโs leading providers of trustee training, support and guidance. Transforming governance for the better. @OfficialCause4 @ClothworkersCo
NERVEmberยฎ
@nervemberproj
The @iPainOfficial hosts #NERVEmber project each Nov since 2009 - NERVEmberยฎ brings awareness to 150+Conditions that have nerve pain involvement including #CRPS
ForwardRolling
@forwardrolling
Helping women obtain leadership positions through the POWER of their Voice. CEO/Founder of VICKtorious|Keynote|BSA|STEAM|Ed. #chronicpain #rare #MGwarrior #EDS