World CDG Organization @worldCDG
World CDG Organization (WCDGO) is the unified voice of people living with Congenital Disorders of Glycosylation (CDG). worldcdg.org World CDG United Voice Joined March 2016-
Tweets3K
-
Followers616
-
Following600
-
Likes1K
📣First data shared from the FCDGC Natural History Study 📣 Check the most recent findings from our brilliant clinical researchers which looked at a group of 2️⃣8️⃣0️⃣ individuals with CDG diagnoses.
First data shared from the FCDGC Natural History Study looking at 280 CDG diagnoses. Unsurprisingly, N-linked CDG (including PMM2) remain the most common type with the evolving group of GPI anchor disorders the second most common. Read more 👉authors.elsevier.com/c/1jMLi3vNNNmz… #cdg
#WorldCDGDay 💚 Today, we stand together to shine a light on CDG🎗️ Let's raise awareness and support for those affected by CDG. Let’s spread love and stand tall together! Share your green colours, awareness activities, and your hopes for the future! #StandUnited4CDG #CDGGoGreen
🌟3 DAYS left to #WorldCDGDay🌟 Join us in spreading awareness and support for those affected by CDG. Together, we can make a difference! 💚💚💚 👉 Still wondering how to get involved? Find out more at worldcdg.org/awareness/worl… #StandUnited4CDG #CDGGoGreen
It’s ⏰ for the #CDGGoGreen movement 💚 👉 Change your Social Media banner and profile picture to raise awareness for CDG ➡️ Share this post and tag three friends to join us ! Together we are stronger! 💪👫 Get them at bit.ly/3LsjIkD #WorldCDGDay #StandUnited4CDG
💚 2 weeks to go to #WorldCDGDay 💚 Are you ready to raise awareness on May 16th? 💪 👉 Prepare now! Explore and use the vast list of materials, available in several languages 🌎 Access it now at bit.ly/3NbMtof #StandUnited4CDG #CDGGoGreen
We are deeply committed to advocating for better mental health. Within this initiative, Vanessa will be amplifying the voices of rare disease families, ensuring their needs are recognized, understood, and addressed 💙 #RareDisease #MentalHeath
#Resilience in #CDG ✊ Understanding resilence levels helps people developing strategies to face daily adversities. In our latest article, we show the importance of caring for #mentalhealth and of professional and social support for our community 🌈 👉 bit.ly/ResilienceCDG
🦓𝗖𝗵𝗮𝗺𝗽𝗶𝗼𝗻𝗶𝗻𝗴 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲s🌍! Vanessa Ferreira will represent CDG and other rare diseases at the IRDiRC Task Force: "A Framework to Assess Impacts Along the Rare Disease Patient and Family Journey." 👏 📍More information at bit.ly/irdirctaskforce
4 weeks to go!📣 May 16 is #WorldCDGDay ➡️ time to start painting the World 𝐆𝐑𝐄𝐄𝐍! 🌍 💚 🌏 Join the #CDGGoGreen campaign that encourages people to use green on May 16th, to show support for children and adults affected with CDG 🙌 #LetsComeTogether
🌍✨ Voices of CDG Families and Advocates✨🌟 📣 You can read all about the stories, insights, and experiences of the worldwide CDG community and get inspired #6thWorldConferenceCDG Report a bit.ly/6thWCCDGReport #CDGCommunity #CDGAdvocacy
✨ Happy New Year ✨ Let's welcome the new year with open hearts and a renewed sense of hope🌈 Let's cherish the diversity of our community and appreciate the unique strengths that each member brings to the table. Let's build bridges and strive for a better future together 🥂
The Rare Disease Day 2024 official video gathers worlwide stories and experiences of the rare disease community and is available in 60 languages! a027.short.gy/FwvUfj Lets come together leading up to Rare Disease Day 29 Feb 2024 Hit share and raise awareness! #RareDiseaseDay
📢The #6thWCCDG report is out! 📘 Dive into the session summaries, insights and breakthroughs at bit.ly/6thWCCDGReport 🚀 Let's amplify awareness and support for CDG. Share the report, join the conversation, and be part of the movement! 🤝 #CDGAwareness #StandTogether4CDG
🎙️2🆕#JIMDpodcast episodes! 🎧Shortcast: PIGO-CDG: A case study, phenotypic expansion, lit review & nosological considerations feat Dr Starosta✨spoti.fi/47KFeuL 🎧CAD Deficiency: Beyond the genetics feat Dr Wortmann, Dr Freeze & Dr Ramón-Maiques spoti.fi/49ya4bm
📚 The CDG State of the Art in 2022 📚 The words of Dr. Joana Poejo bring hope to the CDG community! New information and new people interested in CDG means more opportunities for CDG research 💚 🔗 Read the Full Publication: bit.ly/CDGstateart2022 #RareDiseases #CDGResearch
2024 CDG Scientific & Family Conference, USA 📷 Event Date: March 1-3 📷 Event Location: Mission Bay, San Diego, CA, USA Highlights: 📷Scientific Sessions 📷Family Support Workshops 📷Networking Opportunities Don't miss out! Register at bit.ly/3sch8K8 #RareDiseaseDay
🗣️ "This is the most comprehensive review ever written on CDG. Every stakeholder will find it to her/his liking. A must read!" Curious about out new publication? 🔗 Read the Full Publication: bit.ly/CDGstateart2022 #CDGResearch #ExpertOpinion
🌿Family Well-Being Series: Nurturing Mental Health A journey to strengthen your family's resilience and happiness led by Vanessa, a CDG sibling and experienced coach on November 17, 24, and December 1 (5-1 PM 7isbon time) Register by Oct 31 at [email protected] #MentalHealth
New publication🗣️ ➡️Congenital disorders of glycosylation (CDG): state of the art in 2022*in the prestigious journal Orphanet Journal of Rare Diseases🌟 📚View and download at bit.ly/CDGstateart2022
🌟Nurturing Mental Health🌟 Let's dive into: - Self-care - Resilience - Support strategies 3 sessions on November 17, 24, and December 1 from 5 to 7 PM (Lisbon time) ✨ Register today by emailing [email protected] Deadline: Oct 31 Limited fellowships available #MentalHealth
The Journal of Inheri... @JIMD_Editors
3K Followers 816 Following At a recent Council meeting a decision was made that the SSIEM will no longer interact with X. Please find us on any other Social Media channel.
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Dra A. García-Cazorl... @AGarciaCazorla
2K Followers 2K Following Child Neurologist and Researcher Neurometabolism-Synaptic Metabolism Lab. Director of Research in #Neuropediatrics @SJDbarcelona_es Prof at UB. Tweets my own
Marcin Czerwinski @CzerwinsMarcin
3K Followers 864 Following Researcher | glycobiology | blood groups | enviroment | photography digital and analog | Poland
Alvaro Hermida @Info_Rares
2K Followers 1K Following Specialist on Metabolic Diseases and always looking on the bright side of life.
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
James Nurse @DrJNurse
1K Followers 356 Following Father. Consultant paediatrician. Hockey player. Interested in IMD and Medical Education. Social Media editor at @JIMD_Editors
Sylvia Radenkovic @Radenkovic_S
473 Followers 525 Following Clinical lab geneticist in training @UMCUtrecht. Chair @EMN_MetSoc @FemalesInMS. Alumni @vib_ccb @KU_Leuven @DKFZ @MayoClinic Stem-cell & metabolism fangirl🧠🫀
Ethan Perlstein 1-to-... @eperlste
19K Followers 2K Following ceo @1000cures, ceo @PerlaraPBC (w16 @ycombinator), founder @epalrestat, founder @endrarediseases, founder @smer28rapa
FCDGC @FrontierCDG
453 Followers 768 Following #NIH consortium fostering collaborative research among researchers, patients and clinicians, for congenital disorders of glycosylation (#CDG). RT/Like≠endorse
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following Improving outcomes for those living with rare conditions. Also find us at: https://t.co/kZWskP9Ojj
ERDERA @ERDERA_org
4K Followers 2K Following The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
MetabERN @Metab_ERN
2K Followers 371 Following The European Reference Network for Hereditary Metabolic Diseases. A better future for Rare Inherited Metabolic Disease patients. RT ≠ Endorsement. #Together
22Q11 Ireland @22Q11_Ireland
5K Followers 4K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Clement Chow @ClementYChow
15K Followers 5K Following henfluencer - geriatric millennial - #stopasianhate - don’t call me Clem - emotional eater™️- he/him- @chowlab
Maggie's Pearl @epalrestat
405 Followers 144 Following Clinical-stage biotech company developing epalrestat as the first targeted therapy for PMM2-CDG and other Congenital Disorders of Glycosylation
VASCERN @vascern
2K Followers 607 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
Share4Rare @Share4Rare
3K Followers 2K Following 💻🌍 Plataforma que promueve la #investigacióncolaborativa en #EnfermedadesRaras | Platform that promotes #collabrativeresearch in #RareDisease 🚀 | @IRSJD_info
TEDDY Network @teddy_network
170 Followers 215 Following TEDDY Network is a scientific organization aimed at structuring efforts devoted to the development of medicines tailored for children.
Gregory Gorla @gregorygorla
711 Followers 3K Following Sports Betting, Virtual Sports, Horse Racing & Poker Loving Husband & Girl Dad #GoJHU #ForeverABlueJay #PrideAndPoise
TUSC3 Rare @TUSC3CDG
17 Followers 632 Following Helping to bring awareness and the latest research on TUSC3-CDG / TUSC3 ARID.
R-E @akatzzzzz
371 Followers 3K Following Human supremacist. Former volunteer firefighter/paramedic, current AI founder/researcher. emergency medicine, medical AI and philosophy of science
Utsho Biswas @biswas_uts91411
2 Followers 83 Following
OrphanetJournal at BM... @ojrarediseases
2K Followers 170 Following Orphanet Journal of Rare Diseases is fully open access & published by @BioMedCentral (part of @SpringerNature), on behalf of @INSERM.
Calebe Juchem @CalebeJuchem
1K Followers 741 Following biomedical scientist, master's in medical sciences. 🇧🇷👨🏻🔬🔬 insta: calebejuchem
Charles Marques Loure... @CharlesLourenco
69 Followers 469 Following Clinical Geneticist Neurogenetics and Hereditary Metabolic Disorders Specialist
Chris h @h_chris82611
3 Followers 139 Following
Jesselee Soffer @SofferJess32459
84 Followers 269 Following Have a great rest of your day!smile the world smile with you. just be you, a beautiful noise, friendly with people!
Teach RARE @edu4rare
167 Followers 270 Following https://t.co/8ffmdTgukE Teaching and learning for rare diseases, undiagnosed diseases, and special education.
roro @tekki_roro
28 Followers 124 Following
Lucy Dornan (lucygdor... @lucygdornan
410 Followers 692 Following Account no longer active, find me on BlueSky: https://t.co/SLPCfBhaWs
Julia Martín 🇪�... @juliaciudadana
4K Followers 4K Following Abulense | Lda. en Derecho por la USAL | Enamorada de mi ciudad. Fui concejal y portavoz en el Ayto. de Avila #leal #libre #Avilamenamora #Avila #España
li mu zi @limuzi523246
0 Followers 4 Following
Akhilesh Pandey Lab @Lab_Pandey
242 Followers 139 Following Improving and individualizing medicine through translational systems biology. Mass spectrometry, Multi-Omics, Diagnostics. Mayo Clinic. Views are personal.
Andy Vineyard @justjact
1K Followers 2K Following ~~DO NOT SEND ME DMs~~ 🇺🇲 MAGA: Trump is my President 🇺🇸 🇺🇸 America First 🇺🇸 Free Speech 🇺🇸 Gun Rights Unfiltered Amateur Meteorologist Christian
Lai Phạm @LaiPhm1328809
5 Followers 219 Following
Lenguae - Language Se... @lenguae_
480 Followers 782 Following Your certified language solution partner for individuals, organizations, and businesses of all sizes and industries.
mrv @mrv_aslnts
0 Followers 15 Following
hallotronjhon @hallotronj91845
0 Followers 84 Following
Sahar Sabry @SaharSabry20
1 Followers 57 Following
Tatu Tossavainen @TatuTossavainen
235 Followers 1K Following Passions: Philosophy, politics, books, cooking, nature, arts & conversations. Job: Executive Director at Nuorten Palvelu ry Purpose: To create good.
Maria Elena Scordato @ElenaScordato
140 Followers 317 Following Neurobiologist 🧠 PhD Student in the @TavernaElena Lab, Neurogenomics Centre, @HumanTechnopole
Erica Torres @EricaTorre40496
5 Followers 197 Following
Leia @LeiaThompson3
3K Followers 6K Following 21- she/her- JoJo enjoyer (w a heavy bg3 years long hyper fixation) 🍒⭐️💧🛹🦖🖋️🍈 🍷 🐐📼🪱⏳🌕🐀If i follow anyone problematic lmk~
ExeterGenomes @ExeterGenomes
2K Followers 440 Following Latest news and updates from the exome and genome sequencing service at the Exeter Genomics Laboratory, Royal Devon University Healthcare NHS Foundation Trust
Hello my name is Chlo... @chloebean
336 Followers 417 Following Paediatric Metabolic Clinical Nurse Specialist @uhbwNHS Mother to one wild daughter est 2023 T1D *All views and opinions are my own*
Germaine Pierre @GermainePierre5
5 Followers 16 Following
Loo42 @butters23lil
170 Followers 234 Following
Glycocast @Glycocast
17 Followers 95 Following A podcast/journey of families, sugars and rare disorders. Follow us at: https://t.co/AqY934HKa0
Christina Sidira @matildaki87
14 Followers 227 Following
SSIEM @SSIEM2023
157 Followers 62 Following Discover insights in neurometabolism, therapeutic advances, Mitochondrial Disorders, and more at SSIEM 2023.
StudyRare 🧬 @studyrare
4K Followers 828 Following Board prep 4 @GeneticCouns students & @TheABMGG fellows. Led by clinical geneticist @dpique12 Monthly 📧 w/ board-style q's at https://t.co/r7TJ7GJZRW
JACKY @JACKY64810016
16 Followers 39 Following
Liamoggordon @liamoggordon
16 Followers 809 Following
elena taverna @TavernaElena
1K Followers 2K Following Cell biologist. Brain development and evolution @HumanTechnopole
Foundation Glycosylat... @theFoGsj
3 Followers 4 Following Foundation Glycosylation (the FoG) was founded in 2012. The goal of the FoG is to further research on CDG, specifically therapies targeting CDG.
GLYCOTwinning @GLYCOTwinning
77 Followers 42 Following Building Networks to Excel in Glycoscience Funded by EU under #HorizonEU research and innovation programme. Related tweets reflect only the views of the project
Human Technopole @humantechnopole
8K Followers 702 Following The next-generation #lifesciences institute advancing human health through basic research and collaboration.
Andrew Conrad Kadziol... @ACKadziolka
3 Followers 46 Following A neurodiverse space cadet, perpetually curious about people and the world around me.
chris heitz @cjheitz
43 Followers 395 Following
Celia Azevedo Soares @csoares_mdphd
329 Followers 657 Following Medical Geneticist MD 🧬 🇵🇹 Neurodevelopment PhD 🧠 🇺🇸 Getting into the world of higher education @UnivAveiro
Shri VishwaGujarati S... @glcpccanada9
143 Followers 2K Following GUJARATI LANGUAGE CULTURAL AND PROMOTION COUNCIL CANADA WORKING FOR PRESERVING GUJARATI LANGUAGE & CULTURAL HERITAGE IN CANADA
The Journal of Inheri... @JIMD_Editors
3K Followers 816 Following At a recent Council meeting a decision was made that the SSIEM will no longer interact with X. Please find us on any other Social Media channel.
EURORDIS-Rare Disease... @eurordis
31K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Marcin Czerwinski @CzerwinsMarcin
3K Followers 864 Following Researcher | glycobiology | blood groups | enviroment | photography digital and analog | Poland
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
James Nurse @DrJNurse
1K Followers 356 Following Father. Consultant paediatrician. Hockey player. Interested in IMD and Medical Education. Social Media editor at @JIMD_Editors
Sylvia Radenkovic @Radenkovic_S
473 Followers 525 Following Clinical lab geneticist in training @UMCUtrecht. Chair @EMN_MetSoc @FemalesInMS. Alumni @vib_ccb @KU_Leuven @DKFZ @MayoClinic Stem-cell & metabolism fangirl🧠🫀
Ethan Perlstein 1-to-... @eperlste
19K Followers 2K Following ceo @1000cures, ceo @PerlaraPBC (w16 @ycombinator), founder @epalrestat, founder @endrarediseases, founder @smer28rapa
FCDGC @FrontierCDG
453 Followers 768 Following #NIH consortium fostering collaborative research among researchers, patients and clinicians, for congenital disorders of glycosylation (#CDG). RT/Like≠endorse
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following Improving outcomes for those living with rare conditions. Also find us at: https://t.co/kZWskP9Ojj
ERDERA @ERDERA_org
4K Followers 2K Following The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
MetabERN @Metab_ERN
2K Followers 371 Following The European Reference Network for Hereditary Metabolic Diseases. A better future for Rare Inherited Metabolic Disease patients. RT ≠ Endorsement. #Together
22Q11 Ireland @22Q11_Ireland
5K Followers 4K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
National Human Genome... @genome_gov
79K Followers 376 Following Funding research at the forefront of genomics to improve human health. Formerly the Human Genome Project. https://t.co/4hdQRFkFNU
Clement Chow @ClementYChow
15K Followers 5K Following henfluencer - geriatric millennial - #stopasianhate - don’t call me Clem - emotional eater™️- he/him- @chowlab
RarasNoInvisibles @NoInvisibles
55K Followers 7K Following Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
Avril Daly 💚 @avrilbdaly
1K Followers 2K Following Health Equality Advocate, lover of art & anthropology, living in Dublin, working for Retina International - views are my own
ERN-ITHACA @ERNIthaca
1K Followers 367 Following European Reference Network on congenital malformations and rare intellectual disability (ERN-ITHACA).
Maggie's Pearl @epalrestat
405 Followers 144 Following Clinical-stage biotech company developing epalrestat as the first targeted therapy for PMM2-CDG and other Congenital Disorders of Glycosylation
VASCERN @vascern
2K Followers 607 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
Marisa Godinho @MarisaSGodinho
2 Followers 28 Following
UCIBIO @UCIBIO_Research
496 Followers 194 Following
Iván Martínez Dunck... @dunckerUAEM
3K Followers 3K Following Precision Medicine & Metabolism. Physician-Scientist. Glycobiology and Molecular Diagnosis.
Paula Videira @QuintelaVideira
47 Followers 26 Following
CDG México @MexicoCdg
111 Followers 137 Following 💚Somos una asociación para apoyar a familias y sensibilizar a personas afectadas con enfermedades genéticas de CDG 💚
ProDGNE @ProDGNE
119 Followers 163 Following #ProDGNE unifies European and Canadian efforts to develop a novel #prodrug as a therapeutic approach for #GNEMyopathy, a #rare 🧬 muscle disease #EJPRD #JTC2020
Dr Fatma @bastakif
3K Followers 2K Following استشارية الأمراض الوراثية والإستقلابية Consultant Clinical Geneticist
JCM MDPI @JCM_MDPI
4K Followers 3K Following JCM (ISSN 2077-0383; IF 2025 = 3.3 (Q1); CiteScore 2025 = 5.2) is an international, peer-reviewed, #openaccess journal on #clinical and pre-clinical research.
Morava Eva @EvaMorava
304 Followers 27 Following I’m a pediatrician, geneticist and metabolic specialist. I’m the editor in chief of the Journal of inherited Metabolic Disease.
Bec wallace @misswallace1988
65 Followers 611 Following Mummy to 3 beautiful children ❤ genetics is my passion & my aim is to support parents who are affected by genetic conditions via groups & online
INSIGHT Study @insight_kidney
340 Followers 516 Following INSIGHT is a paediatric, disease-based clinical cohort that is designed to investigate gene and environmental factors in children with nephrotic syndrome.
swii.ch @SWIICHhealth
131 Followers 323 Following Swiich health is an agency of specialists in digital, behavioural change and patient engagement.
UDN @UDNconnect
4K Followers 128 Following The Undiagnosed Diseases Network has archived this account. Past posts are preserved for reference.
Prof.Thomas Pulinilku... @tpulinil
1K Followers 2K Following Dad, Husband, Prof, Scientist, Teacher, Learner, Metabolism-Autophagy-Lysosome-Nutrient Researcher, Movie, Music & Food Lover, Traveller. My Tweets Are My Own.
Merry Lab @MerryLabNotts
2K Followers 2K Following Glycoscience, Cancer and Stem Cells with a sprinkle of Biomaterials | University of Nottingham 🧬 ALL VIEWS PERSONAL TO THE GROUP
Andrea Miller @AndreaM05061634
6 Followers 8 Following
Katie Finch @DrKatieFinch
314 Followers 847 Following Rare Chromosome Condition Advocate, IVF Lab Manager and mum to a trio of tiny pirates 🧬👩🏼🔬🏝️🌈 #SpecialNeedsWin #SEN #chromosomes #raredisease #PGT
Therapeutic Advances ... @TARareDisease
626 Followers 1K Following A SAGE gold open access journal | Publishing high-quality articles in the field of rare disease | Launched in 2020 | #TARareDisease
Holly Carmichael @CarmichaelHolly
184 Followers 218 Following Wife, Mom, Boss, #DisabilityRights & #raredisease Advocate, former CEO @gtindependence, co-founder @epalrestat, here to change the world.
Matthew Wilson @MattWilson4
109 Followers 1K Following Postdoctoral Fellow at the Centre for Human Genetics, KU Leuven
CDG CARE @CDGCAREorg
112 Followers 79 Following CDG CARE is a nonprofit organization founded by parents to support families affected by Congenital Disorders of Glycosylation.
Domenica Taruscio @DTaruscio
3K Followers 2K Following MD, Former Director of the National Centre for Rare Diseases @istsupsan . TW are personal views. RT≠endorsement https://t.co/TSPIwf9mOd…
BIMDG @BIMDG
1K Followers 313 Following Twitter account for British Inherited Metabolic Disease Group. Tweets by Dr James Nurse (@drjnurse) and Dr Rachel Carling (@rachblacklabel).
Ramesh Kumar Konduru @RamSagittariu
310 Followers 4K Following A Unique personality with multiple characters inside.
Andrew Edmondson 🏳... @CDG_MDPhD
580 Followers 907 Following Assistant Professor @ChildrensPhila @Penn MD/PhD ‘13 Clinical Biochemical Genetics/Pediatrics. Opinions my own. He/him. #FCDGC #CDG 🌈
Cure SRD5A3 @CureSrd5a3
90 Followers 250 Following SRD5A3 is a rare congenital disorder of #glycosylation. Our mission is to develop life altering therapies & advance research on this #raredisease. #cureSRD5A3
Paddinni80 🎮🎶�... @Paddinni80
326 Followers 77 Following Father of two 👧👶 Premier League, movie soundtracks and video games are my way of life. 🎮PSN: Paddinni_80 🦎♿ 🇨🇿
Bernadette Sheehan Gi... @sheehangilroy
1K Followers 5K Following Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
Cirenia Arias Baldric... @CireniaSketches
3K Followers 2K Following c(○┬●)כ #Illustrator rocking #scicomm ✏️🐒 I used to pipette and code, now I help others to communicate their work. 👁️🗨️ See the message, feel the impact
Mafalda de Arrábida ... @MafaldaFarelo
1K Followers 964 Following Postdoc at @cityofhope. Virology, vaccine development. | AAI Public Policy Fellow | #Scicomm enthusiast | Tweets in 🇬🇧 and 🇵🇹
Hope the Zebra @hopethezebra
493 Followers 404 Following Bringing the rare disease community together by sharing Hope, laughter and support. [email protected]
blake stuker @BlakeStuker
14 Followers 71 Following This page is for our daughter who was diagnosed with extremely rare disease called SCA 19. Bringing awareness and raising donations.
ChiariTracy @ChiariTracy
2K Followers 5K Following Rare Disease & Healthcare Consultant, Clinical Research Advisor. Medically retired Healthcare pro.
Rich B. , M.D. @iyearntolive129
220 Followers 944 Following Published author of “I Yearn To Live & Not Merely To Exist “ , a differently-abled non-practicing physician , former PRC non-practicing consultant
IACO @IACO_Carers
497 Followers 1K Following The International Alliance of Carer Organizations (IACO) serves as an umbrella organization that advocates for family caregivers on a global scale.
Guillaume Plane @GuillaumePlane
3K Followers 43 Following Avocat | Droit & Fiscalité de l'entreprise | Innovation & Tech
noink @noinkme
206 Followers 266 Following A health platform from DSST Ltd, allowing you to track all aspects of your health condition (no matter how rare). Record what matters & share with your doctor.You might like
