Rare Disease UK @rarediseaseuk
National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease. raredisease.org.uk UK Joined March 2011-
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🚨 IT’S RARE DISEASE DAY! 🚨 Don't forget we have moved to @GeneticAll_UK. All day long we will be amplifying the voices of the rare, genetic and undiagnosed community across the UK. See you over there to see what else we have coming up over the day.
Do you live in the UK and have a child with a #geneticDiagnosis in one of the #genes listed in the image? Help understand how rare #genetic syndromes affect how children grow, their physical health and development by taking part in the GENROC study. ow.ly/skr650OY7OW
We've moved! 🚨 Are you missing our Rare Disease Day posts? Then don't forget to give @GeneticAll_UK a follow. Genetic Alliance UK is the charity that runs Rare Disease UK. We've joined accounts to ensure that you don't miss out on any aspect of the work we do across our brands.
Our work can change lives! In 2024, we want to promote more opportunities to expand newborn and population screening in line with international best practice. Please donate today to help us continue our vital work. 👉 ow.ly/12Q150QiCmU #NewbornScreening
*** This page will stop being updated on 15 December 2023 *** Don’t worry though - follow @GeneticAll_UK now and you won’t miss any of our news, updates, blogs and opportunities.
*** This page will stop being updated on 15 December 2023 *** Follow us now at @GeneticAll_UK to continue getting updates on our work, our brilliant member organisations and the #rare #genetic communities they support.
We can't believe it's only 86 days away! 🤯
We can't believe it's only 86 days away! 🤯
GO GO GO. Get your tickets here: ow.ly/7AYO50PYe9B
GO GO GO. Get your tickets here: ow.ly/7AYO50PYe9B
A useful Q+A about managed migration to Universal Credit with @contactfamilies Advisers from their Family Finance Team is about to start. Link below
A useful Q+A about managed migration to Universal Credit with @contactfamilies Advisers from their Family Finance Team is about to start. Link below
Thank you for everyone who listened to our presentation. We have lots of ways you can get involved in #RareDiseaseDay. Get in touch if you'd like to support our campaign.
Thank you for everyone who listened to our presentation. We have lots of ways you can get involved in #RareDiseaseDay. Get in touch if you'd like to support our campaign.
It's your last chance to WIN! Get your raffle tickets to help us support the 3.5 million people in the UK living with a #RareDisease. 🚗 You could win a car in time for Christmas! thegreatchristmasraffle.com/customRafflePa…
It's your last chance to WIN! Get your raffle tickets to help us support the 3.5 million people in the UK living with a #RareDisease. 🚗 You could win a car in time for Christmas! thegreatchristmasraffle.com/customRafflePa…
*** This page will stop being updated on 15 December 2023 *** Although this page won’t be updated, you can still keep up to date with our news, opportunities, policy/research work and blogs from our community by following @GeneticAll_UK now.
Come along to hear @GeneticAll_UK talk all things #RareDiseaseDay 2024 and see how you can get involved in their campaign! ticketsource.co.uk/wales-gene-par…
Come along to hear @GeneticAll_UK talk all things #RareDiseaseDay 2024 and see how you can get involved in their campaign! ticketsource.co.uk/wales-gene-par…
This #GivingTuesday, support @GeneticAll_UK vital work to champion the rights and needs of the 1 in 17 people living with a rare, genetic or undiagnosed condition in the UK. Together we can transform care coordination & get a good diagnosis for all. ow.ly/AqPv50QbSoj
Thanks for joining us for our presentation
Thanks for joining us for our presentation
*** This page will stop being updated on 15 December 2023 *** Don’t worry though - follow @GeneticAll_UK now and you won’t miss any of our news, updates, blogs and opportunities.
We are very happy to hear about a new project to develop a pathway for children with rare conditions to access individualised therapies. You can see Genomics England's announcement here: ow.ly/L6Pt50QaKmw @GenomicsEngland @MHRAgovuk @OHRareDisease @ABPI_UK
There is an opportunity for 60 patient advocates to get their fee waived to attend #ECRD2024 online. Applications for fee waivers must be received by 12:00 CET on Friday 24 November – that's TOMORROW! 👉 rare-diseases.eu/fee-waivers/
There is an opportunity for 60 patient advocates to get their fee waived to attend #ECRD2024 online. Applications for fee waivers must be received by 12:00 CET on Friday 24 November – that's TOMORROW! 👉 rare-diseases.eu/fee-waivers/
Can you believe that there are only 100 days until #RareDiseaseDay 2024? Follow @GeneticAll_UK to see how you can get involved in the campaign. Is there anything you'd like to see us do for the next big awareness day? Watch the official #RDD24 video now ow.ly/7W3m50Q9RkF
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
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.
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.
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]
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 🦓
Genomics Education @genomicsedu
23K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
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
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Genomics England @GenomicsEngland
30K Followers 2K Following We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
NHS Genomic Medicine .. @NHSgms
7K Followers 816 Following Information for and from the NHS Genomic Medicine Service 🧬 #Genomics. https://t.co/MizyyMpX02…
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.
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
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
FEDER | Enfermedades .. @FEDER_ONG
39K Followers 8K Following 👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 418 organizaciones de pacientes y a 1.546 patologías poco frecuentes
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
Andrew Brown @anbrownie
180 Followers 1K Following
Elsie Megan @poemsandparents
13 Followers 222 Following My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.
Goldenhar UK @GoldenharUK
217 Followers 379 Following Goldenhar Charity (UK) supports people of all ages throughout the UK who are affected by Goldenhar Syndrome and other craniofacial differences .
Jimmy Linda @lind54939
25 Followers 187 Following
DNAUnited @DNAUnited2024
0 Followers 8 Following
Focus On Sickle Cell .. @UgandaSickle
251 Followers 1K Following FOSCA exists to provide a multi-faceted approach to combating SCD that includes testing, research, raising awareness, and providing psychosocial support.
BetteDavisEyes 🇵�.. @deebeeLondon
1K Followers 4K Following South London via Hebron. Artist & Designer. Tonkinese cat slave, ex Labour... Chronic typos, living in a neurological cognitive fog #TransverseMyelitis
Blood MedEd @bloodmeded
220 Followers 861 Following Here for sharing information & bringing awareness to 🩸 disorders &🩸diseases. RTs ≠ endorsements. Help us grow, follow us! #hemophilia #cancer #scd #dvt
Deborah Costa @deborahhcostamm
14 Followers 247 Following mãe do Davi, autista com alteração genética rara #CACNA1C
Felicia Kate Solomon @myfacialpain
600 Followers 1K Following Head and Neck Patient seeking a Diagnosis and Medical Treatment for Benign Disease. Writer and Blogger
Manchester Rare Condi.. @mft_iMRare
601 Followers 234 Following Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions
Owoeye David @davoshalom
771 Followers 2K Following God Lover. Infection Prevention & Control Specialist. Sickle Cell Warrior & Advocate. Author. https://t.co/9z1lvAfJYh…
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
Kelly D 07 @Daley07Kelly
981 Followers 3K Following I am a mum with EDS, Autism and complex physical and mental health issues. I have an adorable son who is my world. Please help me make a change in medical law.
Greg Lynch @northernergrega
98 Followers 928 Following
SHANTANU SENGUPTA @SHANTAN03364656
107 Followers 2K Following
zelalem Geletu, MD @GeletuZelalem
54 Followers 346 Following
Anna Tryfonos @tryfonosannamd
6 Followers 79 Following Pediatric Resident at SUNY Downstate @sunydownstate, Interested in Pediatric Rheumatology https://t.co/W6WFGgXfJz
Sibel Kutuk @kutuksibel1
2 Followers 380 Following
UK Platform for Nucle.. @UpNAT_node
14 Followers 42 Following Creating a national network of experts/stakeholders to facilitate & promote the development of Nucleic Acid Therapies for patients with rare diseases in the UK
Sasidhar @sasidhar_76
0 Followers 43 Following
Adrian Shields @immunologydoc
990 Followers 1K Following Associate Professor and Hon Consultant Immunologist - Clinical Immunology Service @ImmunologyUoB - interested in PID/SID, vaccines, genomics, immunodiagnostics
Arafhart Kibirige @ArafhartK
35 Followers 255 Following
modou @OusmanG31639483
37 Followers 2K Following In the Bible, we are called upon to help others and love theirs neighbor. Scripture tells us Let each of you look not only to his own interest
Rob Hynds @robhynds
2K Followers 2K Following Scientist studying epithelial biology, stem cells and cancer @EpiCENTR_ICH. ⚽️ @BCFC 🏃🏻♂️ @LondonHeathside
Teena Winny @teenawinny_
2 Followers 52 Following
Dra Alejandra Chavez .. @ALECH97
810 Followers 2K Following Medicina Interna - Reumatología - Alta Especialidad en Vasculitis Sistémicas Primarias
Eleni Theiaspra @theiaspra
46 Followers 130 Following PhD Candidate at the University of Cambridge - Clinical Neuroscience / Mitochondrial Biology Unit
Lindsay Bennett @lindsayclark26
127 Followers 2K Following Research Midwife@NLAG 🩵 RH&C Associate Research Champion@Y&H 🩷 WifeMumMidwife🤍
Congenital Hyperinsul.. @CHIA_India
14 Followers 119 Following
Rachel @RachelBuc
226 Followers 1K Following Scientist working in cardiovascular genetics 👩🏻🔬 (@CVGenomics & @thehearthive), feminist & mother of one.
Yosep Wulla @wulla30745
0 Followers 8 Following
Ashok Rao Bommena @BommenaAshokRao
247 Followers 1K Following Health Care Entrepreneur. Previously a member of the Board of Directors for Novo Nordisk India from 2014-2023. Views expressed here are solely my own.
Gill Dale @dale92972
1 Followers 114 Following
NDUDIRI SIXTUS @NdudiriS
19 Followers 152 Following MALE NURSE-MIDWIFE, GRAPHICS DESIGNER, PHOTO/MOVIE EDITOR, CINEMATOGRAPHER, KEYBOARDIST.
Marian - Believe in Y.. @MarianFaithinme
573 Followers 901 Following 🙏🏽Ambassador4Jesus IG@mariana1991 🌏Founder @reachout2all 📚 @Opogoeducation 🎤IntlSpeaker 💫Campaign @myscars2020 🔊@Oasis_UK School Governor
Marlene Soto @Helpingswans
12 Followers 72 Following Helping Swans Co. a nonprofit that is giving books&giving back. Providing parent workshops, storytelling on disability inclusion
Charm @ChangeEvergreen
34K Followers 267 Following Let’s stop weaponizing sex. working on time management. going back to 2020 to warn myself.
Shandy @SharonH91412
0 Followers 37 Following
Ellen Bridson @e_bridson
1 Followers 153 Following
Prabhuling @Prabhuling18
193 Followers 2K Following 3P 1-Personal -Human being, 2-Professional-Scientist 3-Philosophy :Spirituality across all religions & lover of Basava Yoga-Lingayatism (spiritual path)
Mike Wharmby @WharmbyMik2040
0 Followers 22 Following
mary murphy @mdminuk
188 Followers 747 Following Mum, Wife, Determined, Linguist, Loves politics, crime novels, art, history, theatre, music and sport and LIVES with HEDS and Wegeners (GPA) #immunecompromised
Laboratorios Larrasa @LacombeAng976
1 Followers 11 Following
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
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.
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.
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]
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Genomics Education @genomicsedu
23K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
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
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Genomics England @GenomicsEngland
30K Followers 2K Following We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
Professor Dame Sue Hi.. @CSOSue
11K Followers 8K Following I am the Chief Scientific Officer for England and the Senior Responsible Officer for Genomics in the NHS
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.
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
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.
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
Genetics in Medicine @GIMJournal
16K Followers 3K Following Genetics in Medicine, an official journal of @TheACMG Site use policy: https://t.co/gMGoSv2TJY. Cover Photo: Bridge over the Ure by Peter Freeman
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
ACTA2 Alliance @Acta2Alliance
41 Followers 517 Following Supporting families living with Multisystemic Smooth Muscle Dysfunction Syndrome #MSMDS #UltraRare #ACTA2 mutation https://t.co/z2DSxXACs3
CASK Research UK @CASKResearch
166 Followers 354 Following We are a charitable foundation promoting research into CASK gene mutations and associated neurological conditions in hope of finding therapies and treatments
Foundation for ARID1B.. @FAR_ARID1B
108 Followers 96 Following Accelerating the development of disease-modifying treatments for #ARID1B-RD (haploinsufficiency) - the most frequently mutated gene in de novo NDDs (ASD, ID).
Cure Usher @CUREUsher
528 Followers 393 Following Raising funds & awareness for Usher syndrome research. Secretariat for All Party Parliamentary Group. Registered charity, 1181293.
Cure DHDDS @CureDhdds
47 Followers 60 Following Bringing people together to help find a cure for DHDDS gene mutation
NIHR BioResource @NIHRBioResource
2K Followers 2K Following National panel of 250,000+ volunteers, each consented to take part in experimental research and early phase clinical trials based on genotype and/or phenotype.
katie @katieeelcx
227 Followers 490 Following 21 ||🌻live passionately || Founder of @cardsforbravery ✨ ||
Vanessa Carter 🇬�.. @_FaceSA
8K Followers 8K Following #AntimicrobialResistance Patient Advocate • #OneHealth • Chair @WHO Taskforce of AMR Survivors • @AfricaCDC Civil Society Champion • Founder of @theAMRnarrative
Cassandra Lovelock �.. @Soapsub
970 Followers 995 Following Lived experience stuff @NHSEngland Bad Poet. Wannabe author. Postdoc at @kcsamh @SUREatKings she/they ♿ 🏳️🌈
Georgia Lambert (she/.. @GLJourno
853 Followers 943 Following Health reporter at @thetimes & @thesundaytimes and researcher on The Times Health Commission Co-founder of @DisJournoForum [email protected]
Jarod Wong @drjarodwong
795 Followers 625 Following Clinical academic @UofGlasgow.Muscle-bone-growth in health/disease, rare conditions, pt engagement & improving communication. Views my own.
Dr Suja Somanadhan @sujas15
3K Followers 4K Following Associate Professor I Researcher| #FulbrightScholar |Children's Nurse I PhD I #RareDiseases #Child-health #RAIN #RAINDROP #COViSION #SAMPI Views are my own
Clive Smith @Clive_Smith_
1K Followers 1K Following Chair of The Haemophilia Society•World Federation of Hemophilia youth chair•Criminal barrister•Lecturer•Triathlete•🇬🇧 AG Duathlete•Ironman x 4
On The Pulse Consulta.. @PulseInSync
516 Followers 917 Following Independent consultancy partnering with global drug developers and multi-agencies on patient advocacy, engagement and policy-related initiatives in rare disease
Dakota Rosenfelt, Pha.. @DRosenfelt
3K Followers 1K Following Sr MSL. Bleeding Disorders Advocate. TEDx Speaker. Created HemoTool. *All opinions mine, represent no org*
Dr Rich Gorman @SustainableRich
2K Followers 2K Following Social scientist @BSMSMedSchool. Creative research methods, patient involvement, animal & nature-based therapies... and horseshoe crabs. Haemophiliac 🩸
KBG Foundation @KBGFdn
604 Followers 530 Following The KBG Foundation is a 501(c)(3) nonprofit, dedicated to providing support, assisting in research and advocating to raise awareness about KBG Syndrome.
Dan Dry Dock Shockley @DryShockley
638 Followers 5K Following Retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran. I'm an 11 year hereditary colon cancer syndrome, attenuated FAP, WARRIOR.
David Ross @mensraredisease
782 Followers 892 Following MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Metabolic Support UK @weareMSUK
370 Followers 353 Following Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients worldwide.
XLH UK @UkXlh
131 Followers 184 Following XLH UK is a CIO registered in England and Wales (1196811) that supports the families and those living with XLH and other hypophosphataemia's.
Dan Tee ♿️🦓�.. @DanTee2Tech
617 Followers 1K Following Technician @DerbyUni creating videos/interactive, Business Owner, Singer, Digital Artist, Disability Advocate with #hEDS #FND #POTS (Views my own) He/Him
CureGRIN @CureGrin
773 Followers 350 Following CureGRIN is a parent-run foundation committed to improving the lives of people living with GRI disorder. #RareAsOne #GRIdisorder #raredisease
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 6K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Gail Rich @mammyrich19
220 Followers 383 Following Co-Founder of ‘The Nicole & Jessica Rich Foundation’. Raising awareness & funds for Batten Disease after our two beautiful girls were diagnosed in late 2016💗
Norrie Disease UK @NorrieDiseaseUK
296 Followers 358 Following We are a registered charity called The Norrie Disease Foundation. Our aim is to promote vital new research and support families affected by Norrie Disease.
Centre for Neuropsych.. @CNGGcardiff
2K Followers 817 Following We're working to learn more about the genetics behind mental health and illness. Based @cardiffuni Previously @MRCcardiff
David Rose @davidrose88
1K Followers 2K Following Working with @RareRevolutionM 👨🏻💻Ambassador for @GreatOrmondSt 🗣 Rare disease patient 🧬
Rachel Wearmouth @Rachel_w_89
74 Followers 213 Following
Women in Vision UK @womeninvisionuk
2K Followers 361 Following We aim to promote connections between women working in all fields of #Vision and #EyeResearch. Follow us for exciting updates👁 https://t.co/wenwnOE8d8
PublicHealthMaps @PublicHealthMap
7K Followers 6K Following Empowering people with greater understanding about #PublicHealth, #Maps & everything in between. 🌍⚕️🗺️ #PublicHealthMaps | #MapOfTheWeek
Rachel Kean @KeanRachel
1K Followers 4K Following Gender, Disability + Inclusion Adviser for 🇺🇦+Region @FCDOGovUK. Prev DFID/FCDO Disability Lead. Rights, Voice, Choice, Visibility…and Rescue Cats. Views own.
Emily Arkell 🌈 @ekarkell
775 Followers 694 Following @uklabour councillor for Bounds Green & Cabinet Lead for Culture, Communities & Leisure @haringeycouncil🌹🏴
Alexandra Elaine Adam.. @alexandra_DBmed
7K Followers 990 Following
Dr Samuel Chawner @ChawnerSamuel
1K Followers 2K Following @MedResFdn Fellow @CNGGcardiff |Eating Disorders | Child Mental Health| Genetic conditions | Psychiatric Genetics | FHEA Cardiff Education Fellow | he/him
Cell and Gene Therapy.. @CGTCatapult
9K Followers 1K Following Enhancing productivity and growth in the cell and gene therapy industry 🧬🩺🌍
ClearVision Project @ClearVisionOrg
1K Followers 946 Following ClearVision is the UK's free postal library of dual print & braille children's books, so Blind/VI & sighted people can read together. CharityNo.1012850
ISCBH @childrensbones
2K Followers 853 Following Tweets about bone health in children and young people and news about the International Society for Children’s Bone Health #ICCBH #iscbhonline
Newcastle Hospitals @NewcastleHosps
19K Followers 4K Following Newcastle Hospitals is one of the UK's largest teaching NHS Trusts including Freeman Hospital, RVI & Great North Children's Hospital. Tweets Mon-Fri: 9am-5pm
_ERNRITA @_ERNRITA
1K Followers 898 Following ERN for Rare Immunodeficiency, autoinflammatory, autoimmune and paediatric rheumatology Diseases - For all patients with rare immune disorders in Europe
Rare Disease Ghana In.. @RareDiseaseGh
2K Followers 1K Following A nonprofit organisation with the mission to improve the quality of life of persons living with #rarediseases in Ghana. #Awareness #Advocacy #Research #Support.
FightingBackForJack @Fightingbk4Jack
796 Followers 567 Following Family run fundraising organisation, dedicated to helping find a cure for Duchenne Muscular Dystrophy
Neuroendocrine Cancer @Neuroendocrine
6K Followers 3K Following #NeuroendocrineCancer Patient Leader, 3 x @WEGOHealth / @HealthUnion Award Winner, Brit/Scot, #Veteran, opinions mine, also @ronnyallan1 and @World_WNCD
Amanda Pichini @AmandaPichini
1K Followers 948 Following Genetic counsellor 🧬 - works at @GenomicsEngland - proud Canadian 🍁 - loves a good food market - own views
Emily Clarke (she/her.. @TalkingGenes
873 Followers 1K Following Registered Genetic Counsellor @GenePeopleUK. working in the voluntary sector to support the Genetic community. @theAGNC EDI Sub-committee member.
SYNGAP1 Foundation �.. @Syngap1Fnd
3K Followers 3K Following First & Lrg Org Securing $40M #SYNGAP1/ $12.6B in public funds for brain disease research, USA 100% 501c3 focus SYNGAP1 & related overlapping neuro disorders.
NWGMSA @nwgmsa
1K Followers 1K Following NHS North West Genomic Medicine Service Alliance - a network created to deliver the benefits of genomics for the people of the North West of England
Maria Caulfield MP @mariacaulfield
27K Followers 5K Following Conservative MP for Lewes . Contact via email for constituency queries. Promoted by Maria Caulfield of Unit 6, Villandry, Newhaven BN9 9GB
Michelle Bishop @mbishop_uk
1K Followers 910 Following Education Specialist, Genomics devotee. Works at Wellcome Connecting Science, UK. Views are my own.
The Farah Foundation @TheFarahFdn
62 Followers 68 Following Championing the rights of #autoimmune & #chronic disease warriors through advocacy, awareness & policy developments | Mpesa Paybill-4106897It's been a busy day with the @GeneticAll_UK Joint Nation online #RareDiseaseDay event & talks to Gwent Retired Head Teachers Group and to Ross-on-Wye & Newent @RotaryGBI Clubs. Many thanks to all who took attended! 🧬 @ResearchWales @GenomicsWales @rarediseaseuk
Looking forward to attending this online event tomorrow to reflect on the 2024 @rarediseaseday campaign - eventbrite.co.uk/e/rare-disease… @GeneticAll_UK @rarediseaseuk @ITPSupportAssoc
Today, 29th February, is the rarest day of the year and marks #RareDiseaseDay2024! This evening, at sundown, we will be shining a light on one of Oxford’s rarest buildings @magdalenoxford, to raise awareness of the 400 million people living with a rare disease
70 DAYS TO GO! Rare Disease Day (29th February 2024) - Raising awareness and generating change for the 300 million people worldwide living with a rare disease. #ShareYourColours @RareDiseasedayOfficial @WalesGenePark @rarediseaseuk #Ataxia #Raredisease #Patients #Charity #Wales
So much more than a competition 📸 We caught up with some of our past entrants to discuss their stories, their hopes for the future and what being part of the EURORDIS Photo Award means to them! 📰 go.eurordis.org/7QLYnW
🚨 We're excited to announce Virginie Bros-Facer, PhD, as our new CEO @eurordis, starting March 2024! With a heart for progress and a wealth of experience, she's set to amplify the voice of the rare disease community in Europe. Cheers to a new chapter! ℹ️ eurordis.org/new-ceo-announ…
After being let down by four different Christmas grottos, 4-year-old Emily — who is profoundly deaf — was able to meet Santa properly for the first time *ever* thanks to a volunteer elf trained in British Sign Language! 💖 Their encounter is magical: bbc.co.uk/news/articles/…
Living with a hidden disability means I’ve had to overcome many obstacles, and barriers. I love challenging myself, proving others wrong, and I’ll never stop trying 💪🏻#InternationalDayofDisabledPersons #InternationalDisabilityDay #disabilityawareness #thisgirlcan
This year our Christmas appeal is supporting the Juvenile Huntington's Disease family weekend for children and young people affected by Juvenile Huntington's disease and their families. We've put together a short slideshow showing what they get up to during the weekend. @BigGive
We've hit target! THANK YOU everyone. To celebrate, here's an article about how we made our Christmas video in the middle of summer, and what Elodie and family taught us about how to support families with #aplasticanaemia theaat.org.uk/News/an-august… #christmaschallenge #BigGive
25 years ago, I had the most amazing and magical trip of a lifetime to Lapland thanks to @whenyouwishUK 💫 I was nominated as I was unwell, lots of fractures and in/out of hospital. Grateful for the trip and learnt to make the most of everyday 🙌🏻 #charity #raredisease #thankyou
We really enjoyed representing the #CGDSociety at the London Rare Disease Showcase yesterday. It was a fantastic opportunity to grasp the latest #raredisease innovations and advancements and build our relationships with other rare disease groups and experts in the field. (🧵1/3)
@davidrose88 giving a brilliant speech. #RareShowcase23 @RareBeacon
👋 Who can spot our Policy and Engagement Manager for our work in Wales, Emma? She'll be at the Wales Gene Park exhibition stand today's #Genomics After Dark event. Pop by and say hello.
On the way to #Wrexham for today's #Genomics After Dark event with @GenomicsWales at @xplore. Still time to book - we'll be set up and ready to go from 4pm! 🧬🔬🧪🧫 @amy_rattenbury @MedGenWales @SBDRareProject @ResearchWales
Such a pleasure to be at the @NeuroAlliance AGM today, feeling so inspired by the balance of Lived Experience and professionals in the room! Very positive balanced vibe and enthusiasm to do more! Thank you for the invite!
Our colleagues at @WalesGenePark are taking over Xplore! in Wrexham tonight for Genomics After Dark. Emma from Genetic Alliance UK will be engaging with attendees at the Wales Gene Park exhibition stand! Come and say hello! 👋wtm360.co.uk/xplore-science…
Have you heard about our free Genetics event in Wrexham tomorrow? Come along to Xplore! 4-8pm. Book here, now: rb.gy/w8mba @wrexhamcbc @lesley4wrexham @ThisIsWrexham @OnlyNorthWales @InsideNWales @BionetNEWales @nwcancerforum @aparitohealth @R_Hebblewhite Please RT!
20 years ago,my big brother Colin died from ultra rare cancer Pseudomyxoma Peritonei. We had a shared a history & values, love of film & music. Close in age, if not height, we could be mistaken for twins. Loved & missed @PMPSurvivor @rarediseaseuk
A sneaky peek at one of this year’s Christmas cards - available soon!
Diversity is a strength and starting soon we’ll be sharing an even wider variety of updates, resources and stories from our amazing #rare and #genetic network.
*** This page will stop being updated on 15 December 2023 *** Follow us now at @GeneticAll_UK to continue getting updates on our work, our brilliant member organisations and the #rare #genetic communities they support.
This thought-provoking article from @FastCompany highlights the importance of making technology inclusive! 👏 Learn more about digital accessibility here: 👇 ow.ly/3tPr50Q3oP0
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