Medics4RareDiseases @M4RareDiseases
Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare linktr.ee/medics4raredis… United Kingdom Joined February 2014-
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Watch the BBC Lifeline appeal on BBC One on today at 12.50pm and BBC Two on Thursday 2 May at 12:50pm featuring the Huntington's Disease Association. Together we will build a better life for people affected by Huntington's disease. loom.ly/hn35zXk
For the last episode of the season of The #RareDisease Podcast for Medics, our communications lead Emma Huskinson hosts a one-off episode with Emma Macleod and Charlotte Roe who work for our communications agency @emotive__agency. Listen now! 🎧 rdpodcast4medics.buzzsprout.com/share
The majority of individuals living with #raredisease report having felt anxious, stressed, and/or depressed due to their condition. Support the #IAmNumber17 campaign and help us be heard to #ElevateCareForRare.
Today Jo is attending the House of Commons to represent M4RD at the 'I am number 17' campaign's parliamentary launch 🤸 Organised and funded by Takeda in collaboration with campaign partners including us! #IAmNumber17 #ElevateCareForRare.
Yesterday Lucy and Nadine were at @AstonUniversity in Birmingham, delivering #RareDisease 101 Training to 120 medical students. This was part of their pre-clinical studies about metabolic. Thanks to everyone for showing up! 👍
Rare diseases can be challenging to diagnose. This @M4RareDiseases study for patients & their carers IDs possible red flags that could be used in a screening tool. Lead author is Dr Mariam Al-Attar from @SalfordCO_NHS specialist unit for rare diseases rdcu.be/dFp94
'The Unusual Suspects - A Masterclass in #RareDisease Medicine' is the latest blog available to read on our website, written by our fantastic clinical ambassador John Bassett! m4rd.org/2024/04/22/the…
@M4RareDiseases are hiring a Training Programmes Manager ⭐🦓 They are looking for a new member of their team who will have oversight and responsibility for the healthcare professional training projects and activities Deadline 3rd May at 9am Info: m4rd.org/2024/04/04/wer…
We are so happy to say that the winner of @RDStudentVoice's English as a Second Language category Diya Porwal has written a blog all about her experience applying and the advice she would give to future applicants! 😃 m4rd.org/2024/04/16/my-…
Can YOU help support this fantastic event? 👍 We are so happy to say that we are working with our ambassador Jenny Yang to bring you Galactic Genomes: Exploring the Universe of Rare Diseases! You don't want to miss this one!!! Tickets are £5🎈 eventbrite.co.uk/e/galactic-gen…
Thank you to Science Direct for the mention!! 👏👍😍sciencedirect.com/science/articl…
We're HIRING! Could you be our new Training Programmes Manager? We want to hear from you! 👏 Check out the full job description and apply now! 😍 You have until the 3rd of May! 👍 m4rd.org/2024/04/04/wer…
We're really excited to share that Diya Porwal's essay is now available to read! 🙌 📝Battling uncertainty: The story of a SCAD survivor Read here: 👇 ow.ly/7vyi50RcZLh
Well what a fantastic #NationalSiblingsDay2024 that was! Thanks to all those who shared their #ItsaSiblingThing We will be carrying on the conversation over the next few days – so come and join in! ICYMI – check out Mohamed’s sibling story sibs.org.uk/mohamed
For this week’s episode of the podcast, Lucy chats to Jonathan Gibson who works as the Policy and Public Affairs Officer for @weareMSUK! Listen now via the link below🎧 rdpodcast4medics.buzzsprout.com/share
#EDIRA Tickets go on sale this week! Save the date 21st June. We anticipate high demand for this event. Keep checking for updates. Join us 21/06/2024 and ourfabulous facilitators @HumieWebbe @Polandsyndromep @JBrearley @M4RareDiseases @EOloidi @ResearchWales @lifearc1 @rcccymru
"This is a photo of me and my brother Tom. He's been through a lot, health-wise, in his life and I'm full of admiration for the way he's handled it! We always make the most of the days we go to London for hospital appointments" #NationalSiblingsDay2024 @Sibs_uk ❤️
Oscar has NF2 related Schwannomatosis and his brother Dylan looks out for him and importantly fundraises to raise money for research into new treatments or a cure into NF2. He raised over £10,000 & received an award from Nottingham Police. #NationalSiblingsDay2024 @Sibs_uk ❤️
"My sister gets me more than our own family and friends. She knows me well enough to know what I need to brighten my day & and she's developed maturely to understand my rare condition. I can't imagine a world without my sister." @aishseedat ❤️ #NationalSiblingsDay2024
As today's #nationalsiblingsday we're thinking about all those brilliant people growing up with a brother or sister who has a rare chromosome or gene condition, to let them know how amazing they are. Our guide to supporting siblings is free at rarechromo.org/disorder-guide…
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K 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.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Genomics Education @genomicsedu
23K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Unique @Unique_charity
8K Followers 2K Following Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. https://t.co/GkIBlYg5c5
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
NHS Genomic Medicine .. @NHSgms
7K Followers 816 Following Information for and from the NHS Genomic Medicine Service 🧬 #Genomics. https://t.co/MizyyMpX02…
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
James Fasham @JamesFasham
3K Followers 3K Following 🧬👨⚕️Genetics doctor & PhD 💻 💬 Social media: @ESHGsociety @JMG_BMJ and @BritSocGenMed. 🤖 @DiseaseGenes bot creator (#Genetics #Genomics #RareDisease)
Louise Fish @LouiseFish1
807 Followers 2K Following Chief Executive at Genetic Alliance UK. Passionate about improving health and social care.
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
The Journal of Inheri.. @JIMD_Editors
3K Followers 877 Following The JIMD is the official journal of the Society for the Study of Inborn Errors of Metabolism (SSIEM). Podcasts at https://t.co/QZggmJr9Of
Matthias Rare @MatthiasRare
0 Followers 17 Following
sean angelique @jnaoeioelaws
2 Followers 81 Following
Mohamed Wafik @mo__wafik
29 Followers 526 Following 🧬 Clinical Geneticist in London | Paediatric focus | Innovating patient care through genomics | Views are my own 🇬🇧 🇪🇬🔬
NHS Million @NHSMillion
827K Followers 14K Following Creating a team of a million people who are willing to fight for the NHS and its staff at this challenging time. Here to highlight key issues and boost morale.
Steamed Bun Invasion .. @BaoZiInvasion
1K Followers 5K Following Neuroscience Masters student. I am disabled by Autism
Chris Petheram @pethrhiw
25 Followers 338 Following
ksj Beats @KsjYouMadeThis
106 Followers 276 Following Multi Platinum Billboard Producer 💿Credits: meekmill | rockoballinenys | tydollasign | fettywap1738 | pyr3xliving | chrisbrownofficial | tayc | ye + more
David Hughes @dchughes62
1K Followers 2K Following Molecular/Evolutionary Geneticist.https://t.co/GYP4q4WwQ8 Tallis to NIN-Metal Machine Music is music Diogenes was right, views own
Hannah Williamson @Hannn98
29 Followers 659 Following
Alison Aitken @aa_nurse
12 Followers 823 Following independent nurse and public health consultant, stitcher, quilter
Elsie Megan @poemsandparents
18 Followers 224 Following My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.
Goldenhar UK @GoldenharUK
221 Followers 380 Following Goldenhar Charity (UK) supports people of all ages throughout the UK who are affected by Goldenhar Syndrome and other craniofacial differences .
NCA Research NHS @NCAresearchNHS
6K Followers 6K Following Research & Innovation is an integrated service at the Northern Care Alliance NHS Foundation Trust-Salford Royal, Royal Oldham, Fairfield, Rochdale
Udinahmad @udinahmadaja
1 Followers 65 Following
Sharon Roberts @sharongo26
98 Followers 2K Following
༄✿Sana Queen♛�.. @SanaQueen_PTI
1K Followers 1K Following
Stephanie Burgess @steph_rules
188 Followers 1K Following I have Behcets Disease, amongst other illnesses. I hate discrimination. I dream of travelling. I love my friends and family! SIMPLES!! xx
Doge 1000x Gems🐕 @Doge1000xGems
38K Followers 6K Following Crypto & NFTs gem finder | +210K Monthly Supporter's 🚀🚀promotions |📈 DM for marketing and #SOL #ETH #BNB #BTC #SOL #NFT #SOL
is believing ... @isbelieving
726 Followers 2K Following Chronic Inflammatory Demyelinating Polyneuropathy Multifocal Motor Neuropathy Guillain-Barre Syndrome #MMN #GBS #CIDP #peripheralneuropathy #Autoimmune #MS
SHIB ARMY @ShibaArmy2020
107K Followers 37K Following Crypto currency trading and business expert . #DM for Promotion. $memes token #BSC #BSCgem #ERCgem #MetaVerse #NFT promoter #BSC #DYOR
Tootles @nikyham2
111 Followers 266 Following pickleball fanatic cancer warrior- campaign for MCAS EDS and POTS to raise awareness of these terrible conditions -
ClinRheumatol @ClinRheumatol
7K Followers 3K Following Clinical Rheumatology - Journal of the International League of Associations for Rheumatology 2022 Impact Factor: 3.4 Editor-in-Chief: Prof. Adewale Adebajo
Seren Boyd @Seren_Boyd
183 Followers 467 Following Writer with special interest in health, international development, sustainability... and people | @TheDrMagazine @theBMA
aly100034 @aly100034
0 Followers 81 Following
ASOC. DBA España @curadba
388 Followers 1K Following Somos una asociación de afectados por la anemia blackfan diamond, que es una anemia severa, considerada rara (y grave casi 1000 casos en el mundo).
Joanne Ward @jolou20
160 Followers 250 Following NF2, Rare, deaf patient & mum, NF2 community supporter. Raising awareness and funds for NF2. Chief Operations Officer & Trustee at NF2 BioSolutions UK
Deborah Costa @deborahhcostamm
15 Followers 250 Following mãe do Davi, autista com alteração genética rara #CACNA1C
Chromocell @ChromocellThera
31 Followers 114 Following Chromocell is a biotechnology company developing & commercializing novel, non-opioid, non-addictive therapeutics to alleviate pain & associated conditions $CHRO
ADEE España @adee_esp
229 Followers 697 Following 🧬 Asociación de referencia de personas con displasias esqueléticas en España 🫂Apoyamos a las personas con ADEE a lograr su plena inclusión 🤝 ¡Únete!
SHANTANU SENGUPTA @SHANTAN03364656
110 Followers 2K Following
Raramente @Raramente_
0 Followers 14 Following
Rare Disease Research.. @RDRUKHub
135 Followers 89 Following Bringing together the UK’s strengths and expertise in rare disease research.
FOLLOW JESUS AND PRAY @STitabai
8 Followers 155 Following Romans:8.31 What, then, shall we say in response to this? If God is for us, who can be against us?
Arafhart Kibirige @ArafhartK
34 Followers 253 Following
Istaq Ahmad @istaqahmad
219 Followers 3K Following Research Coordinator Department of Neurology, AIIMS New Delhi India
Tweet Care🪶 @thiclaire
669 Followers 3K Following Resilience🫧Peer Support🪢Burden of rare disease🦻Rare Bone Condition🦼Dépendante autonome🦽Maladie Rare🎀Chronique🖍e-pair🎶 Patiente 🎹 recrute AVDH 🔍
Susan Passmore @SusanPassm67933
0 Followers 15 Following
Fewtrella @Fewtrella1
2K Followers 5K Following views my own #LongCovid #POTS #Dysautonomia #Cogcom @GivingVoiceUK winner Advocating for Cognitive Communication Disorder Post Covid
IPOPI @ipopi_info
3K Followers 1K Following IPOPI is the association of Primary Immunodeficiency national patient organisations. Improving awareness, access to early diagnosis and optimal treatments.
JS @JohnSpera
240 Followers 2K Following Husband/ Dad/ Healthcare strategist/ Recreational chef/ Philly sports fan
Lisa Marie Robinson @RomanyScience
2 Followers 60 Following Romany Gypsy, Final year Health Science student. I hope you like chatting about inequalities because that's kinda my thing. All views my own.
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K 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.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Genomics Education @genomicsedu
23K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Unique @Unique_charity
8K Followers 2K Following Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. https://t.co/GkIBlYg5c5
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
NHS Genomic Medicine .. @NHSgms
7K Followers 816 Following Information for and from the NHS Genomic Medicine Service 🧬 #Genomics. https://t.co/MizyyMpX02…
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
James Fasham @JamesFasham
3K Followers 3K Following 🧬👨⚕️Genetics doctor & PhD 💻 💬 Social media: @ESHGsociety @JMG_BMJ and @BritSocGenMed. 🤖 @DiseaseGenes bot creator (#Genetics #Genomics #RareDisease)
Louise Fish @LouiseFish1
807 Followers 2K Following Chief Executive at Genetic Alliance UK. Passionate about improving health and social care.
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
The Journal of Inheri.. @JIMD_Editors
3K Followers 877 Following The JIMD is the official journal of the Society for the Study of Inborn Errors of Metabolism (SSIEM). Podcasts at https://t.co/QZggmJr9Of
SWAN UK (syndromes wi.. @SWAN_UK
9K Followers 4K Following SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
Hilary Benn @hilarybennmp
174K Followers 466 Following Shadow Secretary of State for Northern Ireland and Labour MP for Leeds Central
Preet Kaur Gill MP @PreetKGillMP
50K Followers 6K Following Labour & Co-op MP for Birmingham Edgbaston. Shadow Minister Primary Care and Public Health. [email protected] 0121-392-8426
Dr. Jey McCreight �.. @jeymccreight
11K Followers 1K Following Rhymes with 'write' | Progressive, geeky, atheist, feminist | PhD @uwgenome | Now doing #SciComm They/he 🏳️🌈 🏳️⚧️ #TransInSTEM
UW Genome Sciences @uwgenome
3K Followers 0 Following The Department of Genome Sciences at the University of Washington
Sharon Hodgson MP @SharonHodgsonMP
35K Followers 4K Following Member of Parliament for Washington and Sunderland West | I can't take casework over twitter please email [email protected]
NCA Research NHS @NCAresearchNHS
6K Followers 6K Following Research & Innovation is an integrated service at the Northern Care Alliance NHS Foundation Trust-Salford Royal, Royal Oldham, Fairfield, Rochdale
Rt Hon Andrew Stephen.. @Andrew4Pendle
29K Followers 4K Following Conservative MP for Pendle. @DHSCgovuk Minister. Casework: [email protected] Promoted by Andrew Stephenson, 9 Cross Street, Nelson, BB9 7EN
CoufeteryComms @coufetery
23 Followers 163 Following Medical communications specialist. Based in SW France. Expat blogger. Nature lover, science lover. SEN advocat
Edu Centre Morriston @EdCentreMH
396 Followers 40 Following The Education Centre, located at Morriston Hospital, is the venue for a variety of education, training, conferences, seminars, lectures and meetings.
Speech and Language T.. @SLTWrexhamUni
331 Followers 93 Following BSc (Hons) Speech and Language Therapy course at Wrexham University / Cwrs Therapi Iaith a Lleferydd Prifysgol Wrecsam
Cardiff Met SLT @CMUSLT_SOC
492 Followers 187 Following Cardiff Metropolitan Speech and Language Therapy Society - News, events, socials and fundraising … all views are that of the students
Speech Therapy @CTMUHBspeech
856 Followers 397 Following Speech & Language Therapy department at Cwm Taf Morgannwg University Health Board working with people with communication and swallowing needs & their families.
Women's Aid @womensaid
150K Followers 2K Following Women's Aid is the national charity working to end domestic abuse against women & children.
Norfolk and Norwich U.. @NNUH
21K Followers 4K Following Tweets monitored Mon-Fri 9am-5pm. #TeamNNUH
University Hospitals .. @UHD_NHS
14K Followers 2K Following We are Royal Bournemouth, Christchurch, and Poole hospitals. We are #TeamUHD 💙
Rebecca Long @wontblonguk
833 Followers 1K Following Junior Dr (🧠) | @streetdoctors supporter | @cloresocial fellow | @rcpsychTrainees PTC member | Living and learning, one day at a time | Views my own
HBA Support @hba_support
185 Followers 436 Following Increasing awareness of hereditary brain aneurysms, campaigning for improved patient support and building research into the condition
Rare Advocacy Movemen.. @RareAdvocacy
3K Followers 1K Following Network of people with #RareDisease #LivedExperiences dedicated to evolving the #LivingRare experience into opportunities for the global community to thrive.
Share4Rare @Share4Rare
2K Followers 999 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
United Porphyrias Ass.. @UnitedPorphAssc
153 Followers 298 Following The Future of Porphyria...Raising Awareness, Research and Therapies
RAiN @RAiNAllIreland
477 Followers 475 Following All-Ireland Rare Disease Inter-Disciplinary Network. Working collaboratively to create a positive impact for individuals with Rare Diseases and their families.
ERICA @ERICA_RD_EU
494 Followers 159 Following The European Rare Disease Research Coordination and Support Action
touch MEDICAL MEDIA S.. @touch_medical
204 Followers 666 Following Intended for use by Healthcare Professionals (HCPs) only. It should not be considered medical advice, diagnosis, or treatment recommendations.
FOP Friends @FOPFriends
778 Followers 568 Following FOP is one of the rarest and most debilitating conditions known to medicine, causing bone to form in muscles. Charity #1147704
The Voice UK @thevoiceuk
81K Followers 244 Following The official account for #TheVoiceUK 🎤 Stream series 12 on ITVX and rewatch your favourite moments on our YouTube channel ✌🏼
Kirsten Johnson, FRSA @DrKirstenJ
1K Followers 316 Following Pianist, composer, FRSA, FISM, Chair of Fragile X International, Board member of EURORDIS, member of RDI's Council (she/her) https://t.co/lQMlueCv4a
Hunterian Museum Lond.. @HunterianLondon
9K Followers 676 Following The Hunterian Museum at the Royal College of Surgeons of England Banner image - Concourse (2) by Barbara Hepworth, 1948, Barbara Hepworth © Bowness
Olly Murs @ollymurs
6.7M Followers 3K Following
Phil Jerky @PhilJerky
2K Followers 1K Following Tall, beardy, stand-up comedian with Young-onset Parkinson's. All views expressed are my own. Email: [email protected]
Manchester Rare Condi.. @mft_iMRare
602 Followers 234 Following Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions
The Journal of Medici.. @Medicine_Access
526 Followers 1K Following The Journal of Medicine Access an #openaccess international, peer reviewed Journal dealing with access to medicine and healthcare published by @SAGE_Publishing
Neuromuscular Disease.. @CureHIBM
524 Followers 183 Following Mission: To enhance the quality of lives of those living w/ #GNEmyopathy (HIBM) through advocacy, education, outreach & funding research on treatments #CureHIBM
Canadian Association .. @PorphyriaCanada
97 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
Ciliopathy Alliance @CiliaAlliance
955 Followers 619 Following Fighting diseases caused by ciliary dysfunction https://t.co/Yr0TesVQP1 #AlstromSyndrome #PCD #BBS #NPHP #Jeune #Joubert #Meckel #OFD1 #RP #Usher #PKD
RARE Ireland @rareireland
1K Followers 3K Following We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
Rhiannon Armstrong @RhiannonMArmstr
746 Followers 2K Following Adult Inherited Metabolic Disorders CNS | former Critical Care Deputy Sister | wife and a mum to two busy boys #Cymraes #Welsh 🏴
Caroline Wright @carolinefwright
979 Followers 525 Following Academic research scientist in human genetics and genomic medicine (https://t.co/0qv9wG8bXn); pianist; hiker & outdoors enthusiast
Dr Jane Brearley @JBrearley
607 Followers 2K Following Founder and CEO of Intent Health, an agency built on the foundations that true diversity, creates stronger teams and more relevant campaigns
Selvaseelan Selvaraja.. @DrSelvarajah
26K Followers 8K Following Just an East End GP with roles @BBB_health , BMA, RCGP, NHSWTE, LMC etc. #TeamGP #NHS . Views - mine only, not organisations I’m part of. #தமிழ்
Liam Barker @liambarker
13K Followers 2K Following Doctor in London. "I would have gone to my high school reunion, but the boat I was educated on sank." 🏳️🌈
Karen Creed @CreedKMW
44 Followers 76 Following Lead midwife @CaS_Genomics Views my own #midwife #midwifery
South East London Can.. @NHS_SELCA
921 Followers 539 Following We're here to improve cancer diagnosis and treatment for patients across south east London (Bexley, Bromley, Greenwich, Lambeth, Lewisham, and Southwark).
Charlotte Proud @proudcharlotte1
4K Followers 3K Following Mental Health Nursing Apprentice @CNTWNHS @sunderlanduni Love exercise. Living with a rare disease (Osteogenesis Imperfecta). London 2012 Olympic Torchbearer.
Haemochromatosis UK @IronOverloadUK
3K Followers 638 Following We're the UK's only charity supporting people affected by genetic #haemochromatosis (#IronOverload). For advice contact our helpline (Mon-Fri 12-3pm, UK only).
ERNICA @ernica_ern
704 Followers 132 Following The European Reference Network for Rare Inherited Congenital Anomalies
Andrew McFadyen @isaacfoundation
1K Followers 1K Following Executive Director. Member NYU @CUPAEthics and NYU PGTME. GE2P2 Independent Bioethics Advisory Committee. MHSc Candidate, UofT.
ERN CRANIO @cranio_ern
562 Followers 146 Following The European Reference Network for rare and/or complex craniofacial anomalies and ENT disordersWatch the BBC Lifeline appeal on BBC One on today at 12.50pm and BBC Two on Thursday 2 May at 12:50pm featuring the Huntington's Disease Association. Together we will build a better life for people affected by Huntington's disease. loom.ly/hn35zXk
It was lovely to join my constituents @prestonp_paul and @Rachability at the first ever Poland syndrome festival! Very little is known about Poland syndrome and many families struggle to access support. Thanks so much to Paul and Rachel for campaigning on such an important issue
The majority of individuals living with #raredisease report having felt anxious, stressed, and/or depressed due to their condition. Support the #IAmNumber17 campaign and help us be heard to #ElevateCareForRare.
It often takes years of tests, hospital appointments and misdiagnoses for a patient with a rare disease to receive a proper diagnosis, which can have a considerable emotional impact on patients and caregivers. 👉 iamnumber17.org.uk Help us #ElevateCareForRare #IAmNumber17
People living with #RareDisease must often manage their own care. The burden of care coordination can create pressures across the lives of patients, their families and carers. Help us #ElevateCareForRare #IAmNumber17 Check out iamnumber17.org.uk cc @GoPI3Ks
People living with rare disease must often manage their own care. The burden of care coordination can create pressures across the lives of patients, their families and carers. Help us #ElevateCareForRare #IAmNumber17 @AS_UK @GenePeopleUK @MPSSocietyUK @Ataxia_and_Me @UKPIPS
Our CEO @LouiseFish1 will be in Parliament today at a reception for the #IAmNumber 17 campaign, which drives progress towards elevating care for people living with #RareConditions. Learn more about the campaign 👉 iamnumber17.org.uk #ElevateCareForRare
1 in 17 people in the UK will be affected by a rare disease at some point in their lives, which is why I'm proud to support the #IAmNumber17 campaign. We must #ElevateCareForRare, to ensure that the 1 in 17 get the care and support they need.
Thank you Lucy and Nadine for spreading the word about #RareDiseases 👏👏
Yesterday Lucy and Nadine were at @AstonUniversity in Birmingham, delivering #RareDisease 101 Training to 120 medical students. This was part of their pre-clinical studies about metabolic. Thanks to everyone for showing up! 👍
Rare diseases can be challenging to diagnose. This @M4RareDiseases study for patients & their carers IDs possible red flags that could be used in a screening tool. Lead author is Dr Mariam Al-Attar from @SalfordCO_NHS specialist unit for rare diseases rdcu.be/dFp94
@Andrew4Pendle Yay! That's wonderful Andrew 😊 @M4RareDiseases
RNA vs DNA, what's the difference? Read the latest Genomics 101 blog to find out 🧬 ow.ly/76JE50Rg0BC #DNA #RNA
Are you a healthcare professional that can help reach more families affected by an undiagnosed condition? Take a look and help distribute @SWAN_UK's new flyer for #UndiagnosedChildrensDay - taking place on Friday 26 April 2024!
📣 We have an updated SWAN UK flyer! Perhaps you're a healthcare professional that could share some to help more families find SWAN UK sooner? Let us know here or by emailing [email protected]. #undiagnosed #SyndromeWithoutAName #undiagnosedGeneticCondition #UCD2024
Great to see our poster is going down a storm at #BTOG24 (British Thoracic Oncology Group conference) in Belfast. Thanks Tom for sharing!
And it's off! Our brand new ‘This is Me’ #RarePatientPassport is winging it's way around the world 🌍 to the first 571 people who signed up! Giving our RARE community the tools to communicate their #RareCondition their way. Have you got yours? 🦓 #RareDisease
@M4RareDiseases are hiring a Training Programmes Manager ⭐🦓 They are looking for a new member of their team who will have oversight and responsibility for the healthcare professional training projects and activities Deadline 3rd May at 9am Info: m4rd.org/2024/04/04/wer…
High ammonia kills and people are dying because of overlooked symptoms. This needs to change. Support the “Think Ammonia!” campaign from @weareMSUK which aims to improve outcomes for high ammonia! #ThinkAmmonia ow.ly/Ighi50RajS7
#EDIRA Join us at our second EDIRA event on the 21st June 2024 .#Equality #Diversity #inclusion #PatientCare #PPIE The eventbright link is in the chat below.
🏁 In just nine days Team MSUK will find themselves at the starting line of the infamous London Marathon. Can you help cheer on and support our ten runners? Find all their pages in our most recent Metabolic Matters Magazine: buff.ly/3xwunrt #TeamMSUK #LondonMarathon2024
@M4RareDiseases Thank you for having us, it was lovely to catch up and have the opportunity to highlight the work we're doing!
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