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 rarediseaseday.org Worldwide Joined February 2009-
Tweets2K
-
Followers44K
-
Following3K
-
Likes2K
We are looking to partner with a creative agency to develop and produce our visual materials for the 2025-2028 #RareDiseaseDay campaigns. The deadline for submitting tenders is Friday 3 May 2024. 👉 download2.rarediseaseday.org/2025/Rare-Dise…
Did you take part in #RareDiseaseDay 2024? We want to hear from you! 📣 We want to know your thoughts on how we can grow the campaign for 2025. What went well? What could be better next year? Fill out our survey 📝 before 1 April 👉 form.jotform.com/240503292874356 #ShareYourColours
The #RareDiseaseDay colours 💙💚💜 shone brightly on 29 February 2024! With the #LightUpForRare initiative, we advocated for the 300 million people living with a rare disease. Today, we look back at a selection of captured illuminations that joined our Global Chain of Lights ✨
Join us in spreading awareness this #RareDiseaseDay! 🌍 @irdirc is bringing together the incredible efforts of member organizations. Check out the collaborative post showcasing their impactful contributions on this Rare Disease Day 🔗irdirc.org/rare-disease-d…
Your incredible support for Rare dazzled us! 🌟 Through our Global Chain of Lights, you illuminated awareness about rare diseases, lighting up the world. Stay tuned for a video featuring highlights from the #LightUpForRare campaign! Together, we make a difference! #RareDiseaseDay
☝️Gracias a la tecnología y las redes sociales, las personas afectadas por enfermedades raras están encontrando y formando comunidades de apoyo, compartiendo experiencias, conocimientos y esperanza. 📱💻 🔔29 de febrero, Día Mundial de Enfermedades Raras 2024.💜 #SOSporlasRaras
Hoy conmemoramos el #DiaMundialEnfermedadesRaras Un día para hablar, crear conciencia y apoyar a los pacientes y familias que viven y han vivido alguna de las más de 7000 enfermedades raras. Visita sanfilippocolombia.org #raredisaseday #raredisease #rarediseases
We had such a fun and meaningful #RareDiseaseDay with you all! From the TODAY Show Plaza in the morning to seeing the Empire State Building #LightUpForRare at night, rare was on display everywhere today! #ShowYourStripes #NYC
29 de fevereiro é um dia raro e o Dia Mundial da Doenças Raras. Junte-se a nós e faça parte da campanha para assinalar esta efeméride. Partilhe o vídeo! #RDPortugal #DoençasRaras #DiaMundialDasDoençasRaras #RareDiseaseDay
💡The Screen4Care partners (and their mascots 🦓) are excited to #LightUpForRare and wish everyone a happy #RareDiseaseDay! #Screen4Care #NBS
HAPPY RARE DISEASE DAY 🩷💙💜💚 #RDSA #RARENESSAWARENESS #RAREDISEASES #RAREDISEASEDAY24
February 29 is #RareDiseaseDay - an opportunity to shine a light on diseases that many may never have heard of - conditions often hard to treat for various reasons including cost. Here's one such story from @nottmhospitals in the UK - of a little girl with #AngelmanSyndrome.
February 29 is #RareDiseaseDay - an opportunity to shine a light on diseases that many may never have heard of - conditions often hard to treat for various reasons including cost. Here's one such story from @nottmhospitals in the UK - of a little girl with #AngelmanSyndrome.
Mapping Rare is going live! For #RareDiseaseDay2024, visit our website to learn about the the achievements of our rare disease community: rarediseasesinternational.org/mappingrare/
3,5 millions de Français souffrent d’une maladie rare. Nous devons tout faire pour améliorer leur prise en charge. Pour la journée internationale des maladies rares, l’action se mêle à la sensibilisation. Voici nos premières mesures issues du 4ème plan national. #JIMR2024
The visible challenges facing those living with rare diseases are the tip of the iceberg. Let’s not settle for skimming the surface. It's time to #ActRare2024, dive deep, and emerge with solutions for a brighter future. 🏊 Dive into our policy demands: eurordis.org/actrare2024/
We’re thrilled to announce the launch of Canada’s Rare Disease Network newswire.ca/news-releases/…
The Philippines joins #LightUpForRare in celebration of @rarediseaseday and National Rare Disease Week #NRDW2024 #CareForRarePH February 29 is #RareDiseaseDay Thank you @NPDC_PH @natmuseumph @UPManilaOnline for joining the global chain of lights! Maraming salamat po!
🤝 Collaborate with @FEDER_ONG and support scientific research #RareDiseaseDay
Today's the day! We are thrilled to officially launch the Canadian Rare Disease Network (CRDN) on #RareDiseaseDay. Together, we will make a difference for ALL rare disease patients across Canada. 🚀 #CRDNLaunch #RareLivesSharedStrength #Canada4Rare #RareDiseaseDay
🎙️ Discover Leif's journey with GNE Myopathy on #RareOnAirStories. From diagnosis in Switzerland to resilience in adversity, Hear his story of perseverance. Tune in: rarediseaseday.org/heroes/leifs-s… #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.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
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]
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 🦓
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
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
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
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
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
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
Abby Turnwald (she/he.. @PedsGCAbby
925 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
Dr. Tracy Dixon-Salaz.. @TracyDixonSalaz
3K Followers 975 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
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
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Anita MacDonald @macdonj
2K Followers 660 Following All tweets discuss low protein foods to help children on low protein diets. All views are my own.
James @OG_Jabo_Squeeze
452 Followers 5K Following James 1:1-6 IG: jamesmitchelliii AMOSC: datmigojabo 👌🏿🤟🏿🙌🏿😇🙏🏿✌🏿🤞🏿 #KeepGod1st☝🏿
Steamed Bun Invasion .. @BaoZiInvasion
1K Followers 5K Following Neuroscience Masters student. I am disabled by Autism
melinda hughie blaloc.. @Mmhblalock
19 Followers 525 Following mama • wife • advocate • fundraiser • medical mama • Epilepsy | ASD • thyroid cancer & 🫀 aneurysm survivor • INTERESTS: neuroscience, epilepsy 🧠 philanthropy
ksj Beats @KsjYouMadeThis
112 Followers 160 Following Multi Platinum Billboard Producer 💿Credits: meekmill | rockoballinenys | tydollasign | fettywap1738 | pyr3xliving | chrisbrownofficial | tayc | ye + more
Chrissy Gainey @cgainey1671
2 Followers 60 Following
Karma Lebanon @Karma_Lebanon
4 Followers 34 Following A Lebanese NGO registered at the Ministry of Interior under nr 2565, supporting the treatment of underprivileged pediatric patients with cancer & thalassemia.
Othon Romero Terán @othon_o
10 Followers 145 Following
Cayenne Wellness @CayenneWellness
772 Followers 880 Following Improving nutritional & mental health through education, research, awareness initiatives & more. For more info., please visit https://t.co/SptI4GEzRa!
Elsie Megan @poemsandparents
13 Followers 223 Following My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.
Meriem Ouchfoun @OuchfounMeriem
0 Followers 19 Following
HiTech Health @HealthHitech
134 Followers 390 Following Enabling healthcare companies to launch and supply products.
Alexandra Vitale 👩.. @Mlle_web
171 Followers 564 Following Cheffe de projet digitale 🪄 | Je partage les dernières tendances du #digital 🔍 #SEO #IA #SocialMedia #Marketingdigital #Ads
Udinahmad @udinahmadaja
1 Followers 56 Following
badtro @btis
62 Followers 671 Following
Sumac Imilla @sumacimilla87
136 Followers 983 Following
TurningPainIntoStreng.. @MichellesMemoir
253 Followers 460 Following Is pain a part of your life? Contact me! AUTHOR: Turning Pain Into Strength PODCASTER: https://t.co/Ns752TrvdI
Sharon Roberts @sharongo26
98 Followers 2K Following
euGenius @some_pharmaguy
94 Followers 5K Following
༄✿Sana Queen♛�.. @SanaQueen_PTI
1K Followers 1K Following
Samantha @SamanthaWebb01
7 Followers 332 Following
Celso Sarinho @zelao81
10 Followers 67 Following
Global Holistic Wealt.. @day_holistic
158 Followers 220 Following Global Holistic Wealth Day is celebrated on April 9th every year. Founded by the Mother of Holistic Wealth @keishaoblair. Join our global community.
DNAUnited @DNAUnited2024
0 Followers 8 Following
Nature Reviews Geneti.. @NatureRevGenet
92K Followers 225 Following Publishing reviews and commentaries across the fields of genetics and genomics. Part of @SpringerNature and @NaturePortfolio. Tweets are from the editors.
Rachel Damico @RDamicoJHHPH
166 Followers 196 Following
SHIB ARMY @ShibaArmy2020
101K Followers 36K Following Crypto currency trading and business expert . #DM for Promotion. $memes token #BSC #BSCgem #ERCgem #MetaVerse #NFT promoter #BSC #DYOR
MargartFrankforter @MargartF91354
3 Followers 652 Following
Arun Senniappan @Arunsenniappan
66 Followers 657 Following
Aniket Parikh @aniketparikh
82 Followers 266 Following Getting the hang of this social media lark. Views are my own (except when they're someone else's)
Irishgirl @Irishgirl1
145 Followers 793 Following Wife&busy working mum of 2. Value loyalty&fairness. Director @synergyvision. Trustee Beaumont Hosp Foundn. Passionate 4 centrist global politics. All views mine
[email protected].. @Birgermunthegm1
9 Followers 27 Following
Global MedCon @GMedCon
2 Followers 30 Following Global MedCon is your Expert Consulting Partner in Medical Technology, Lifesciences, Genetics, Clinical & Market Research and Regulatory Solutions.
Medical Pediatric med.. @MPSIC_SA
3 Followers 14 Following
Alessandra Akai Tsubo.. @SaekoRossi
147 Followers 987 Following Anime and manga lover ♥️ I have APS.. June Is APS Awarness month🎀 Spread awarness or ask to me about antiphosho.. What 🧬🎀🎀🩸
Srashti Dubey @SrashtiDubey16
5 Followers 8 Following
danIel PapIch @PapichDaniel
1K Followers 4K Following U-tubedanielpapich in comments tiktok instagram twitter danielpapich facebook [email protected] with painting profile horses are not profile pic
Amayah @brave_swiftie
26 Followers 66 Following Just your average Swiftie ❤️ I suffer from insomnia so expect a lot of posts because I can't sleep lol
brandy dyer @brandyldyer
7 Followers 113 Following
GS @Gaps4u30
13 Followers 48 Following
Maged Hosney Alansary @MagedHosney_MD
24 Followers 228 Following
LauraShaw @A471Y08OF9WHk39
4 Followers 359 Following
BOOBOO @BOOBOO938145441
897 Followers 2K Following Live in the Greatest Republic in the World , Donald J Trump is the real President of the United States of America,NO DM's Please unless your MAGA
Ramiro Maldonado @RamMaldonado32
1K Followers 2K Following @Dukeeyecenter Retina specialist. Ophthalmic Geneticist. Clinician-Scientist. #ophthalmicgenetics #genetherapy #electrophysiology #translationalresearch
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.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
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]
Raras pero Reales @RarasReales
12K Followers 3K Following Sanofi, comprometidos con el descubrimiento de terapias para pacientes con #EnfermedadesRaras. https://t.co/wduV3mGwsQ
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
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
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
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
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
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
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
CORD @raredisorders
5K Followers 729 Following CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
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.
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.
Ariane Weinman @WeinmanAriane
17 Followers 19 Following EURORDIS-Rare Diseases Europe Public Affairs Senior Manager
Rare Diseases IORD @rarediseases_in
345 Followers 110 Following Indian Organisation for Rare Diseases (IORD) is a not-for-profit umbrella organisation with presence in India & USA, working for all rare disease stakeholders.
Screen4Care @Screen4Care
325 Followers 123 Following Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening and Artificial Intelligence
Rare Disorders Kenya @RareDiseaseKE
861 Followers 147 Following United Voice for the Kenyan Rare Disease Community! #PatientDriven #RareDiseaseKE
The Jackson Laborator.. @jacksonlab
22K Followers 7K Following Est. 1929, JAX is a non-profit scientific research institute specializing in 🧬 genetics, 🧮 genomics & 🐁 mouse models of disease. https://t.co/SrWBTGUJ00
Pensemos en Cebras M�.. @PCebras
255 Followers 78 Following Iniciativa Pensemos en Cebras México sumando esfuerzos y aglutinando acciones enfocadas en la detección, diagnóstico, tratamiento y atención temprana e integral
Child & Youth Care @ChildYouthCareZ
254 Followers 315 Following Supporting the interests of children living with rare medical diseases.# inherited bleeding disorders #health education # quality care# early diagnosis
APARDO @APARDO_official
32 Followers 12 Following Asia Pacific Alliance of Rare Disease Organisations (APARDO) is a non-profit organisation consisting of patient advocate leaders from across the APAC.
ALIBER @InforAliber
400 Followers 154 Following Alianza Iberoamericana de Enfermedades Raras, Huérfanas o Poco Frecuentes. Somos referente en defensa de derechos de 42 millones de afectados en Iberoamérica.
Rijetke Bolesti @RijetkeBolesti
67 Followers 19 Following Hrvatski savez za rijetke bolesti okuplja druge udruge i pojedince koji boluju od rijetkih bolesti.
Rare Aware @rare_aware
386 Followers 779 Following Our RARE ACTIVist programme needs YOU to help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community.
Una Esperanza para Fe.. @hope4fernandaSV
84 Followers 143 Following Maria Fernanda padece #TRAPS una enfermedad autoinflamatoria incurable, pero si con tratamiento sumamente caro. Por eso pedimos de su ayuda. #RareDiseases
Asociación FFPacient.. @ffpaciente
18K Followers 3K Following Únete a la comunidad de #FFPaciente.Asociación #FFPaciente sin ánimo de lucro creada para dar voz y visibilidad a los #pacientes a través de las redes sociales
Twibbon @twibbon
2.9M Followers 4 Following A Twibbon campaign is your very own microsite where users can support your cause, brand or organisation in a variety of ways.
Noah Higón Bellver @nh487
40K Followers 1K Following Vivo más de lo que puedo, sueño aún como niña y sobrevivo a golpe de gotero. Jurista, politòloga i escriptora. #ComPol 💜🦻🏼📩 [email protected]📗👇🏼
World Obesity @WorldObesity
23K Followers 789 Following The World Obesity Federation is a not-for-profit devoted to addressing the global #obesity burden. Sign up for news: https://t.co/HLAkmXrx3P
World Obesity Day @WorldObesityDay
3K Followers 13 Following Together we can create a healthier future.
Erik @erikruizmar
692 Followers 615 Following Programme manager at @HCWHeurope | Advocating to tackle pharmaceutical pollution and AMR | Ex @Europarl_en, @EURORDIS | Views=mine
Solve-RD @Solve_RD
2K Followers 403 Following Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.
Sickle Cell Society @SickleCellUK
11K Followers 2K Following The Sickle Cell Society supports and represents people affected by sickle cell disorder to improve their overall quality of life.
Australian NPC Diseas.. @NiemannPickOz
181 Followers 126 Following Australian Niemann-Pick Type C Disease Foundation is a not for profit organization that is trying to raise awareness and funds for research into a cure.
UK Thalassaemia Socie.. @teamukts
2K Followers 668 Following The only national charity working exclusively for all things #thalassaemia. We support families & professionals, educate, campaign for change & fund research.
Rare Disease Action F.. @rdaf_rare
20 Followers 8 Following The Rare Disease Action Forum (RDAF) is a nonprofit multi-stakeholder organization dedicated to improving lives of patients with rare diseases in Switzerland.
🇪🇺 Ilaria Galet.. @iaiaraia
350 Followers 652 Following SSc patient advocate Vice Chair of FESCA and GILS, ERN ReCONNET ePAG, Equal access to therapies is my obsession
Sickle Cell Awareness.. @awareness_cell
2K Followers 4K Following Dr Dexter's/CEO-SickleCellFoundatio /Aware the people for sickle cell.(work for decrease SickleCell Birth & SCD Mother Mortality).Sicklestory#Writer#Blogger
ERKNet @EuRefNetwork
1K Followers 486 Following ERKNet is devoted to improving the lives of patients with rare kidney diseases by expert knowledge sharing, outcome monitoring and clinical research.
ERN eUROGEN @ERN_eUROGEN
1K Followers 542 Following Improving diagnosis, treatment & care for rare urogenital diseases & complex conditions needing highly specialised surgery. Funded by the EU.
ERN CRANIO @cranio_ern
562 Followers 146 Following The European Reference Network for rare and/or complex craniofacial anomalies and ENT disorders
RareEndoERN @RareEndoERN
2K Followers 348 Following #EuropeanReferenceNetwork Connecting care in the EU for patients with rare endocrine conditions.
_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
ERN RARE LIVER @ERN_RARE_LIVER
1K Followers 187 Following A major opportunity for better treatment for patients with rare liver disease in Europe
Rare Diseases Malta @RareDiseasesMT
237 Followers 103 Following The National Alliance for Rare Diseases Support – Malta
EuRRECa @eurreca
722 Followers 341 Following The European Registries for Rare Endocrine Conditions is supported by EU, ESE, ESPE & Endo-ERN to serve the needs of the endocrine and rare disease community
ERN GUARD-Heart @ERNGuardHeart
594 Followers 216 Following ERN GUARD-Heart is part of the European Reference Networks for rare or low-prevalence disease and focuses on rare and complex diseases of the heart. @AMC_nl
Ali Kimara Rare Disea.. @AliKimara
1K Followers 244 Following Our purpose is to raise awareness and advocate for the consideration and inclusion of children living with the rare diseases in health and education systems.
95, Rare Alliance Gre.. @95Rare
434 Followers 420 Following 95, Rare Alliance Greece is a Greek non-profit Organization advocating for all who live with a rare & an undiagnosed #RareDisease 🔺 #ΣπάνιεςΠαθήσεις #Υγεία
UAE Rare Disease Soci.. @UAERDS
808 Followers 1K Following الحساب الرسمي لجمعية الإمارات للأمراض النادرة The official account of the United Arab Emirates Rare Disease Society #UAERDS
ORDIndia @ORDIndia
1K Followers 986 Following National rare disease advocacy, 24/7 patients hotline, engage Hospitals, Physicians, Pharma/Biotech/Dx industry, Orphan drugs act for India, Global Alliances
Rare Disorders NZ @RareDisordersNZ
543 Followers 325 Following Rare Disorders NZ is the connector hub and collective voice of rare disorders in New Zealand.
Illness Challenge Fou.. @bn2challenge
14 Followers 33 Following The Beijing Illness Challenge Foundation (ICF) is the first public welfare foundation in Beijing focusing on rare diseases.
SMA-Europe @SMAEurope
2K Followers 1K Following SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
CML AdvocatesNetwork @cmlnet
2K Followers 674 Following CML Advocates Network: Network of 128 chronic myeloid leukemia patient groups in 93 countries. #CML #Leukemia #CureCML #PatientAdvocacy
Raquel Peck 🇧🇷 .. @RaqPeck
3K Followers 3K Following Consultant supporting change actors 🌎 | Ex CEO of @Hep_Alliance | Co-Founder @WGHLusofonia | #NOhep pioneer | #patientengagement #policy #rarediseases #health
OIFE @OIFE_OI
1K Followers 5K Following Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella organization for OI-societies around the world.
Virginie Hivert @VirginieHivert
428 Followers 120 Following Therapeutic Development Director @eurordis
We joined the Global Chain of Lights #LightUpForRare on @rarediseaseday. St Helen's John Prescott Bridge in Merseyside was lit to celebrate and raise awareness of rare diseases including #ichthyosis. It looked absolutely stunning! Thank you Jroneography for the amazing footage.
O Dia Mundial das Doenças Raras assinalou-se há uma semana e ainda não nos saiu da cabeça! Cada um de nós deu o seu contributo ao participar na conferência, ao iluminar edifícios públicos e privados, ao partilhar os materias da efeméride, entre outras ações. Obrigada a todos! ❤️
We #LightUpForRare to help fill the world with color in celebration of everyone living with a rare disease ❤️💚💙💜 #RareDiseaseDay2024
#LightUpForRare 2024: Gratitude extended to all our members and council buildings for capturing and sharing exceptional images, contributing significantly to the promotion of Rare Disease Awareness.
Thank you to all the organizations, cities, landmarks, and individuals who joined the effort to #LightUpForRare across the globe! Check out a few of the landmarks that were illuminated in #RareDiseaseDay colors. 💙💚💜💗
Supporting all those worldwide who are affected by rare diseases. We see you. #RareDiseaseDay @eurordis
Join us in spreading awareness this #RareDiseaseDay! 🌍 @irdirc is bringing together the incredible efforts of member organizations. Check out the collaborative post showcasing their impactful contributions on this Rare Disease Day 🔗irdirc.org/rare-disease-d…
À l'occasion de la journée internationale des maladies rares, je me suis rendue sur ce lieu symbolique de la Plateforme maladies rares où j'ai échangé avec les associations de l'@AllianceMR. Je suis convaincue que notre force réside dans notre unité et notre engagement dans la…
Thank you to everyone who attended @GeneticAll_UK Westminster reception today, including @LizTwistMP for hosting, Minister @Andrew4Pendle for speaking and Grant who eloquently shared his sister Jess’s story to remind us why our work matters #RareDiseaseDay
💚💗💙 @ern_reconnet would like to thank you all for the impressive support you gave us with the #RareDiseaseDay awareness, on the #SLE survey, and on the latest #webinar we hold this week! 🙏Thank you from the Coordination Team ⏱️Time to go back to work n launch something else
Hoy conmemoramos el #DiaMundialEnfermedadesRaras Un día para hablar, crear conciencia y apoyar a los pacientes y familias que viven y han vivido alguna de las más de 7000 enfermedades raras. Visita sanfilippocolombia.org #raredisaseday #raredisease #rarediseases
✋📉La situación de desfinanciamiento del sistema de salud está poniendo en riesgo el acceso de los pacientes a medicamentos y tecnologías en salud, así como a servicios para su cuidado integral.🩺💊 🔔29 de febrero, Día Mundial de Enfermedades Raras 2024.💜 #SOSporlasRaras
#ATENCIÓN 📌Reforma a la Salud, una prueba para la protección financiera de pacientes con enfermedades huérfanas. Conozca los detalles aquí(abra la imagen)⤵ tinyurl.com/mr24nu4u @Fecoer @AmChamCol @MinSaludCol @muc_oficial @PROMEDICOS @odpdh
Hoy se celebra el Día Mundial de las Enfermedades Raras para impulsar una movilización global que permita posicionar la realidad de estas patologías en la agenda pública. Unámonos para dar visibilidad a quienes enfrentan estas condiciones. Cc @Fecoer linkedin.com/pulse/d%25C3%2…
"En el Día Mundial de las Enfermedades Raras se hace un llamado a los congresistas para que en el trámite del proyecto se garantice el acceso, tratamientos oportunos, suministro de medicinas y cobertura financiera de los servicios..." Vía @AmChamCol amchamcolombia.co/noticias-colom…
☝️Gracias a la tecnología y las redes sociales, las personas afectadas por enfermedades raras están encontrando y formando comunidades de apoyo, compartiendo experiencias, conocimientos y esperanza. 📱💻 🔔29 de febrero, Día Mundial de Enfermedades Raras 2024.💜 #SOSporlasRaras
We had such a fun and meaningful #RareDiseaseDay with you all! From the TODAY Show Plaza in the morning to seeing the Empire State Building #LightUpForRare at night, rare was on display everywhere today! #ShowYourStripes #NYC
Hoje é Dia Mundial das Doenças Raras! 🥳 Junte-se à iluminação de edifícios, monumentos e casas particulares, assista à conferência anual, partilhe o vídeo oficial da efeméride, tire fotografias e publique nas suas redes. Conheça as iniciativas aqui: raras.pt/ddr2024/
29 de fevereiro é um dia raro e o Dia Mundial da Doenças Raras. Junte-se a nós e faça parte da campanha para assinalar esta efeméride. Partilhe o vídeo! #RDPortugal #DoençasRaras #DiaMundialDasDoençasRaras #RareDiseaseDay
Trends for United States
You might like
