Office for Rare Conditions Glasgow
@orcglasgow
The Office for Rare Conditions aims to raise awareness of rare conditions, enhance the quality of care provided & promote participation in multi-centre research
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http://www.officeforrareconditions.org 13-12-2016 14:14:46
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Muscular Dystrophy UK
@mduk_news
We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
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.
Ghaisani Fadiana
@ghaisani_na
Pediatric Endocrinologist • Interest in #Diabetes #BoneHealth #CongenitalHyperinsulinism • Developing PEDIA Project to #beatNCDs #Type1Diabetes in 🇮🇩 •
Myotonic Dystrophy Foundation
@myotonicstrong
The world's largest patient organization focused solely on #myotonicDystrophy. Our mission is Community, Care, and a Cure.
Glasgow Children's Hospital Charity
@gch_charity
We are Glasgow Children's Hospital Charity. Fundraise or donate to support our young patients, their families & our NHS heroes in #Glasgow 💜🌈
Haemophilia Society
@haemosocuk
We are a community that makes each other feel stronger every day. Membership is completely free and everyone affected by a bleeding disorder is welcome.
Ana Luisa Priego
@nalypz
Pediatric Endocrinologist
Euvian Tan
@euvian_tan
Proud to be working in #raredisease 🙏❤️🇬🇧🇲🇾🌏
Gene People
@genepeopleuk
Charity supporting families affected by genetic conditions providing the UKs only free Genetic Counsellor-Led Helpline 0800 987 8985 | [email protected]
We're not on X anymore – formerly @PifOnline
@pifonline
This account has been archived. Follow us on LinkedIn, Bluesky and keep up to date via our websites pifonline.org.uk and piftick.org.uk.
SWAN UK (syndromes without a name)
@swan_uk
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
Louise Fish
@louisefish1
Chair of Rare Disease Advisory Group (RDAG), former CEO at Genetic Alliance UK and TSA. Passionate about improving health and social care. All views my own.
PIP-UK
@polandsyndromep
Poland Syndrome Charity facebook.com/pip.uk.org Poland Syndrome is a rare birth difference affecting hands and chest.
Michelle Conway
@mrsmjc2010
Independent Consultant working in Rare Disease Policy. Cares about improving care in rare diseases, making the world a better place and my family ❤️
Sensory Beginnings
@sensorybegin
Emily Hills, neonatal occupational therapist and Lindsay Hardy, clinical specialist occupational therapist.
Genetic Alliance UK
@geneticall_uk
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
SHCA
@theshca
The Specialised Healthcare Alliance (SHCA) is a coalition of over 140 organisations which campaigns on behalf of people with rare and complex conditions
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.
I McInnes
@ilmcinnes
Paediatric Trainee ❤️ Medical Education ❤️ International Child Health
Professor Dame Sue Hill
@csosue
I am the Chief Scientific Officer for England and the Senior Responsible Officer for Genomics in the NHS
22Q11 Ireland
@22q11_ireland
Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Genomics Education
@genomicsedu
NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
amiral
@amiraltwite
Dr.amiR
Jas Redfern
@redfernjam
Rangers. Arsenal. Accies. Father of 3 boys. Laudrup was great but Bergkamp is king
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
ILF Scotland
@ilfscotland
We provide financial support to ensure over 3,000 disabled people in Scotland and Northern Ireland have the ability to live independently.
James Fasham
@jamesfasham
🧬👨⚕️Academic Consultant in Clinical Genetics 💬 Social media chair: @ESHGsociety. 🤖 @DiseaseGenes bot creator #Genetics #Genomics #RareDisease
Professor Mark Kilby MB BS MD DSc FRCOG FRCPI
@mark_d_kilby
Consultant Fetal Medicine @BWC_NHS, Emeritus Professor of Fetal Medicine at University of Birmingham, UK. Tweets my opinion
Sameena Javed
@javed_sameena
Child loss survivor. Mariya Renfrewshire Inspirational Young Citizen 2021, Kiltwalk Hero 2021, Glasgow Times Young Scotswoman of the Year 2021
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.
RARE-e-CONNECT
@rareeconnect
A Cyprus-based telecollaboration platform for healthcare professionals and people with Rare Disorders #elearning #informationsharing #networking
Aggie O
@aogenetix
ex-AFP▫️med + genetics▫️academic med, clinical genetics, rare diseases, muscle▫️she/her▫️views own
Craighalbert
@craighalbert
Craighalbert is a charity that provides learning, therapy and care for children and young people with neurological conditions.
The LUNA Project
@thelunaprojectt
We are The LUNA Project, a charity run by young people w/ lived experience of disability committed to raising awareness of and supporting disabled young people
Mario Medina
@marionhs24
Engagement Manager for @NHS24 All views my own
Royal Hospital for Children, Glasgow
@rhcglasgow
This account is no longer active. You can follow us on our other platforms below: facebook.com/RoyalHospital4… instagram.com/rhcglasgow
Therapeutic Advances in Rare Disease
@tararedisease
A SAGE gold open access journal | Publishing high-quality articles in the field of rare disease | Launched in 2020 | #TARareDisease
Sarcoid Awareness Film
@sarcoidfilm
We are producing what will be the first full-length film to focus solely on sarcoidosis awareness!💜 Project Purple 🎥 #sarcoidosis #documentary #filmmaker
MngieIndia(Project by Anushree Foundation Trust)
@mngieindia
MNGIE India Twitter page aims to connect MNGIE patients across the globe to encourage the efforts made by bioscience companies to develop it's cure.
Rareminds
@raremindsuk
Specialised mental health and wellbeing services for the rare disease community. bit.ly/rarementalheal…
@ODExpertGroup
@odexpertgroup
Established in 2020, the European Expert Group on Orphan Drug Incentives brings together representatives of the broad rare diseases community.
Dr Susi Shanks
@susishanks
Mum of a fun PCD-teen
Sarah
@sarahbuetens
PNW Queer enby with multi-system diseases #EhlersDanlosSyndrome #POTS #MCAS working for #Functionalmedicine #genetic approach to find causes, diagnosis & cures!
Glut1 Deficiency UK
@glut1uk
A parent led charity, dedicated to improving the lives of those affected by Glut1 Deficiency through support, education and medical research.
Skeletal Dysplasia Group For Teaching and Research
@sdg4tr
The Skeletal Dysplasia Group was founded in 1979 with the aim of promoting teaching and research into the rare developmental disorders of skeletal growth.
ERICA
@erica_rd_eu
The European Rare Disease Research Coordination and Support Action
DrugOrphanisation
@orphanisation
@WellcomeTrust #OrphanDrugs: High prices, access to medicines and the transformation of #biopharmaceutical #innovation @sheffielduni @ihumansheff #raredisease
Arlene Smyth
@arlenesmyth2
Metabolic Support UK
@wearemsuk
Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients worldwide.
Z
@myasthenicmedic
Myasthenia Gravis Warrior, Intercalating Medical Student @uofgmedicine. Interested in trauma and motorsport medicine Instagram: @themyasthenicmedic
United Porphyrias Association
@unitedporphassc
The Future of Porphyria...Raising Awareness, Research and Therapies
GloBE-Reg
@globe_reg
The Global Registry For Novel Therapies In Rare Bone & Endocrine Conditions
RAREAwareGlasgow
@rareawareggow
A society dedicated to raising awareness about rare diseases, the impact on patients and carers, and what medical students can do to drive positive change.
RhianneCHS🧸
@rhiannechs
I’m Rhianne and the Officer @ChildHealthScot! I'm all about #MyHealthMyRights. Follow my adventures with Bear here 🧸Views are my own.
Rare Disease Clinical Trial Network, Ireland
@rare_trial
HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.
RareDiseases Journal
@rarediseasesj
Journal of Rare Diseases Research & Treatment is aiming to remain as a credible source of information on rare diseases and orphan drugs
Sophie Dziwinski
@sophiedziwinski
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]
Per Magnusson
@magnussonstoke
Prof, Bone research, Alkaline phosphatase, Mineralization, Nephrology, Film lover, Premier League, Stoke City
HUG RHC NICU
@hugrhc
HUG -helping us grow. Based at RHC NICU Glasgow, working with staff and parents to empower families to care for their baby in challenging circimstances
Alyson Walker
@alysonwalkerrhc
Paediatric Cardiac Anaesthetist @ Royal Hospital for Children (Glasgow, Scotland). Learning From Excellence, Appreciative Inquiry, Design. SQSFc11.
CDH International
@cdhintl
The world's oldest, largest & leading Congenital Diaphragmatic Hernia charity. @cdhiuk @canadacdh @CdhiSingapore @CdhiHongKong @cdhiswitzerland @CdhiNl
Acute Paediatric Physiotherapy Service
@nhsggcrhcphysio
This account is no longer active. You can follow the Royal Hospital for Children on Facebook and Instagram
Klinefelter’s Syndrome UK
@klinefeltersuk
#Klinefelters Syndrome (KS) is a common congenital condition which is found in around 1 in 600 male births #UK #Charity #Chromosomes #XXY #KlinefeltersSyndrome