International Gaucher Alliance
@igagaucher
The IGA represents the interests of Gaucher patients and non-profit Gaucher patient groups worldwide. Find us on Threads: threads.net/@igagaucher
ID: 1021334930004078594
http://www.gaucheralliance.org 23-07-2018 10:03:17
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449 Followers
201 Following
Kantar North America
@kantar_na
Kantar, the world’s leading marketing data and analytics company. Part of @KantarGlobal
UC San Francisco
@ucsf
UC San Francisco is the leading university exclusively focused on health. @UCSF on Instagram, Facebook, LinkedIn and YouTube
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
Dr Debra Fine
@debsfine
GP I ex-accountant I Trustee M4RD I #DareToThinkRare
NEJM
@nejm
The New England Journal of Medicine is the world’s leading medical journal and website.
Paul Guijt
@paulguijt
Oud ZFR, CVZ, RIVM: kwaliteit van zorg en preventie. Zeldzame ziekten en ICT. Natuur en Slovenië.
Karolinska Institutet
@karolinskainst
The account has been deactivated. For news about research, visit news.ki.se.
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.
Department of Health and Social Care
@dhscgovuk
We support ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer.
GeneDx
@genedx
Making the diagnostic journey clear, actionable & connected 💙 Experts in pediatric exome & genome sequencing 🧬 Fast Company’s Most Innovative 2025🏅
The Royal Society of Medicine
@roysocmed
The Royal Society of Medicine is a leading provider of continuing learning to healthcare professionals. Our vision: better healthcare for better lives.
michaeljfox.org
@michaeljfoxorg
The Michael J. Fox Foundation is dedicated to finding better treatments and, ultimately, a cure for Parkinson’s disease. Social Info: bit.ly/2yCT0BQ
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Royal Free London
@royalfreenhs
Delivering world class care at Barnet, Chase Farm, North Mid and the Royal Free 🏥. Follow @RFLjobs and @RoyalFreeChty. Account monitored Mon-Fri, 9am-5pm.🌈💙
Evergreen Computing
@evergreen_uk
Evergreen create #BespokeSoftware systems tailored to the way your business works. Your Business, Your System, Your Way. #PHP #SoftwareDevelopment
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
WFH
@wfhemophilia
The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world.
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Marine Conservation Society
@mcsuk
The UK's leading marine charity working towards a cleaner, better protected and healthier ocean for everyone 🌊
AKU Society
@akusociety
Alkaptonuria (AKU) or Black Bone Disease, causes severe osteoarthritis, heart disease & other serious health problems. Help us find a cure.
NYU Grossman School of Medicine
@nyugrossman
The latest clinical news and research from experts at @nyulangone. The Most Top 10-Ranked Specialties in New York by U.S. News & World Report.
جامعة القاهرة Cairo University
@cairouniversity
Cairo University is one of the most influential universities in the Middle East Official Twitter جامعة القاهرة
Acopel
@acopelcomunica
Asociación Colombiana de Pacientes con Enfermedades de Depósito Lisosomal. Ayúdamos a personas con enfermedades poco comunes: #Pompe #MPS #Fabry #Gaucher #EERR
World Orphan Drug Congress
@orphan_drugs
World Orphan Drug Congress Europe | 27 - 29 October 2025 | RAI Congress Centre, Amsterdam
UCL
@ucl
Sharing highlights of life at UCL (University College London), London’s leading multidisciplinary university. Follow @uclnews and @uclevents.
Rare Genomics
@raregenomics
RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.
Simon Waddington
@profsimonwad
Professor of Gene Therapy, University College London 🧬🚲🛠
Kantar UK & Ireland
@kantar_uki
UK and Ireland content from @Kantar: the world’s leading data, insights & consulting company. We help our clients understand people and inspire growth. #MRX
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.
Beyond the Diagnosis
@beyondthedx
Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
Dr Fatma
@bastakif
استشارية الأمراض الوراثية والإستقلابية Consultant Clinical Geneticist
Cambridge University Hospitals NHS
@cuh_nhs
We run the world-leading hospitals Addenbrooke’s and The Rosie. We’re unable to offer medical advice on our Twitter channel.
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.
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.
NHS England Workforce, Training and Education
@nhse_wte
We are now part of the new NHS England. Account managed 8:30 – 17:00
Trudy Nyakambangwe
@nyatrudy
Wife. Mother. Founder of @ChildYouthCareZ PhD Student Liberal Feminist!
RDLA
@rareadvocates
A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Faculty of Pharmaceutical Medicine
@facultypharmmed
With our 1,600 members the Faculty of Pharmaceutical Medicine works to advance the science and practice of pharmaceutical medicine for the benefit of the public
Orphan Reach
@orphan_reach
Orphan Reach: Emmes' global Rare Disease Center. We partner with innovative biotech companies to bring new therapies for rare diseases to the market.
Seema Kanwal
@drseemakanwal
Naturopathic #Doctor + speaker with focus rare #genetic diseases. Passionate about #nutrition, helping women succeed + love supporting local ethical businesses!
Bionical Emas
@bionicalemas
Powering the patient journey
Studio Vajevec
@studiovajevec
Igralski studio je bil ustanovljen leta 1980. V studiu gojimo dramsko igro po metodi Lee Strasberga.
CORD
@raredisorders
CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
Kellie Vallance
@kellievallance
Professional singer and dancer. Doing what I love, performing all over the world. Part time dance teacher, full time awesome xx
WORLDSymposia
@worldsymposia
We're Organizing Research on Lysosomal Diseases
Rick Thompson
@ricksthomp
Evolutionary biologist, turned CEO for Beacon: for rare diseases. All views my own.
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
MPS LH Derneği
@mpslh
Biz lizozomal depo hastalıkları olan hastalar ve yakınları olarak bu sorunları birlikte aşmak üzere bir araya gelen hasta ve hasta yakınlarıyız.
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
HCD Economics
@hcdeconomics
Health economics experts. Part of the Prime Global group
Raras pero Reales
@rarasreales
Sanofi, comprometidos con el descubrimiento de terapias para pacientes con #EnfermedadesRaras. pro.campus.sanofi/es/legal/polit…
AVROBIO
@avrobio
We are a clinical-stage lentiviral gene therapy company, powered by our plato® gene therapy platform. Our vision: bring personalized gene therapy to the world.
Breaking Down Barriers
@barriersdown
BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.
Spur Therapeutics
@spurtherapeutx
Advancing the practice of genetic medicine to develop life-changing gene therapies for debilitating chronic conditions. Toward More™
DataSavesLives
@datasaves_lives
A Europe where trustworthy data sharing supports health & scientific research to meet the needs of patients. We support the #datasaveslives movement! Find us ⤵️
Giulia Massaro
@drgiuliamassaro
Lecturer and group leader working on gene therapy viral vector technologies @School_Pharmacy | @UCL GTx Viral Synthesis Facility | @_BSGCT | @aisuk_info
EWGGD
@ewggd1
The aim of the EWGGD is to promote clinical and basic research into Gaucher disease
The Student Voice Prize
@rdstudentvoice
Closed for entries! Annual, international essay competition for medical & nursing students focused on rare diseases📝💊🩺 Run by @RareBeacon & @M4RareDiseases
Gauchers Disease
@gauchers3
Living the rollercoaster world on Type 1 Gaucher’s Disease. Late 20s, male, living in London, UK. Diagnosed in 2009. On Cerezyme Enzyme Replacement Therapy
#ThePaedipodsCast #TheCoronaCast by @Paedipods
@paedipods
Podcast/Platform all things #Coronavirus #Paedipods. Insights. Key Research. Educate. Inspire. Founder/Podcast Host @Pranai_B
Josh Cook
@cookphotograph
Photographer based in Falmouth • instagram.com/joshcookphotog…
Rare Disorders Zimbabwe
@childyouthcarez
Supporting the interests of children living with rare medical diseases.# inherited bleeding disorders #health education # quality care# early diagnosis
Rare Disorders Kenya
@rarediseaseke
United Voice for the Kenyan Rare Disease Community! #PatientDriven #RareDiseaseKE
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]
On The Pulse Consultancy
@pulseinsync
Independent strategic consultancy by @TheWoollard partnering with industry and multi-agencies on patient advocacy and policy-related activities in rare disease
Hemophilia
@hemophilia_rm
Page no longer active. Follow @RaremarkHealth for #hemophilia Our vision is to shape a world where all rare conditions are understood and treated. #RareDisease