Mary Wang @marywangCM
Programme Director @rarediseasesint, working on #RareDiseases, global #access; care, diagnosis, medicines. PhD CellBio. My own tweets linkedin.com/in/marywang Italy Joined April 2018-
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The Joint Action #JARDIN & #ERNs conference starts tomorrow! Our goals: 📣raise the awareness of the #JointAction and #RareDiseases ⚕️support the integration of ERNs into national health systems paving the way for their future sustainability Questions: shorturl.at/gDIPY
Mapping Rare is going live! For #RareDiseaseDay2024, visit our website to learn about the the achievements of our rare disease community: rarediseasesinternational.org/mappingrare/
Tomorrow is #RareDiseaseDay! Join the Global Chain of Lights! 🌍 The rare disease community will unite to spread solidarity with monuments, offices, schools, and homes lighting up in the Rare Disease Day colours! Don't miss out on Feb 29, 7 PM local time! #LightUpForRare
Equity for rare diseases in 🇰🇪means Yara thrives with the best quality of life It empowers her parents to care for her while leading fulfilling lives, contributing to society & the economy. Your support in raising awareness gives our community recognition & drives policy action
Today is #SocialJusticeDay! The 17 #GlobalGoals are a universal call to action for social justice, to end poverty, protect the planet, and ensure that by 2030 all people enjoy peace and prosperity. ➡️ go.undp.org/SDGs
Our co-founders @rokanja and @cmutena representing at the @rarediseasessa #RareX2024 conference in J'burg. We (as a founding member of Africa Rare Diseases Alliance #ARDA), are working towards a cohesive & vibrant community for PLWRDs on the continent. #RareDiseaseKE
This #RareDiseaseDay discover a world of advocacy, innovation, community and leadership. Join us to launch MAPPING RARE.🗓️ 1 March 2024 📷 14.00 CET 08.00 EST. 👉bit.ly/489gVX6 @NoInvisibles @RareDiseases @rarediseaseday @eurordis @alexheumber
📢 Read now (open access) the @irdirc paper, "Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community". Dive into the latest insights from the IRDiRC Task Force on lessons learned and emerging trends in drug repurposing. 🔗frontiersin.org/articles/10.33…
On #RareDiseaseDay, we at @rarediseasesint, the global umbrella organization for PLWRD, will highlight the achievements of our members through an exciting new project. Follow us for updates: @rarediseasesint And you, what are you going to do for Rare Disease Day?
📢 The #CHMP recommended 7 new medicines for approval, including: ☑️ 1st #CRISPR/Cas9 therapy to treat #SickleCellDisease & #BetaThalassemia ☑️ a medicine for #FriedreichsAtaxia ☑️ a medicine to treat #Schistosomiasis outside the 🇪🇺 europa.eu/!Qw3KK4
Happy Universal Health Coverage Day! Quality health services for all, including 300 million Persons Living with a Rare Disease worldwide. This #UHCDay, hold leaders accountable to fulfill commitments from #UHCHLM and make #HealthForAll and #UHCforPLWRD a reality by 2030!
Universal Health Coverage ensures everyone can access quality health services without financial hardship. People living with a #RareDisease have specific medical & social needs and must be included in #UHC. Leave no one behind! #UHCforPLWRD #HealthForAll #PLWRD
⚙️ The new #ERNs brochure developed by the @EU_Commission it is NOW available in 2⃣6⃣ different #languages to facilitate the dissemination of its important contents. 📥download for free 📲 share the link among your communities to support all the ERNs! 🔗bit.ly/3v1MTX9
The right to quality health services and financial protection is universal. With #UHCDay happening tomorrow, we call on leaders to take immediate steps to achieve #HealthForAll by 2030. The clock is ticking. The time for action is now. universalhealthcoverageday.org/toolkit/
Great to be at this #WODC session on Newborn Screening with @M4RareDiseases @eurordis @rarediseasesint @GenomicsEngland
Today at the UN, RDI and its partners sent a clear message: Universal Health Coverage must meet the needs of People Living with Rare Diseases. ➡️ Read our statement: rarediseasesinternational.org/wp-content/upl… #UHCforPLWRD #UHCHLM #RareDiseases #LeaveNoOneBehind
From a thought in 2014 to the world's largest health platform in 2023 ... #Excited #Blessed #RareDisease #UHCHLM
It’s almost time! Our Patient Advocates, Christine Mutena @cmutena and Dr. Rachel Yang, are ready at the UN Headquarters in NYC for our event on leaving no one behind in Universal Health Coverage. Are you ready too? ➡ See the Livestream here: lnkd.in/duXvrnuw
“People living with a #raredisease constitue a vulnerable population mostly invisible to the healthcare social system and ignored until recently. We now need a global framework for action for rare diseases with a WHA Resolution.” @yann_eurordis, CEO @eurordis - at the #UHCHLM
Our CEO Alexandra Heumber Perry, Council Chair Durhane Wong-Rieger and Founder and Treasurer Yann Le Cam are at the UN Headquarters creating the Blueprint for Leaving No One Behind in #UHC. Are you watching? lnkd.in/duXvrnuw
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
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
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.
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
@ERN_RND 🧠 @ERN_RND
2K Followers 759 Following European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: https://t.co/nowjhyNigm
CNAG @cnag_eu
5K Followers 1K Following The Centro Nacional de Análisis Genómico carries out projects in genome analysis to improve people’s health and quality of life #genomics #personalisedmedicine
ECRIN @ECRIN_ERIC
2K Followers 484 Following ECRIN's mission is to support the conduct of multinational clinical research in Europe
BBMRI-ERIC @BBMRIERIC
3K Followers 2K Following Pan-European network to support biobanking and biomolecular research. Co-funded by 🇪🇺 within @EU_H2020 Research Infrastructures programme
Solve-RD @Solve_RD
2K Followers 402 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.
Fondazione Telethon @Telethonitalia
89K Followers 2K Following La Fondazione Telethon ETS (Ente del Terzo Settore) è nata nel 1990 per rispondere all'appello di pazienti affetti da malattie rare.
Irene Norstedt @IreneNorstedt
5K Followers 4K Following Director @EU_Commission 🇪🇺 'People, Heath and Society' Directorate, DG Research & Innovation @EUScienceInnov @HorizonEU #EUHealthResearch #UnionOfEquality
VASCERN @vascern
2K Followers 636 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
ern euro_nmd @euro_nmd
2K Followers 738 Following Building bridges and breaking barriers in rare neuromuscular diseases.
EOSC-Life @EoscLife
2K Followers 386 Following EOSC-Life creates an open collaborative digital space for life science in the European Open Science Cloud (EOSC). 🇪🇺-funded project under @EU_H2020 GA #824087
IRDiRC @irdirc
3K Followers 2K Following #IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat
ICPerMed @ICPerMed
612 Followers 259 Following ICPerMed provides a platform to initiate and support communication and exchange on personalised medicine research, funding and implementation. H2020 GA N°964197
German Biobank Node @bbmri_de
1K Followers 717 Following German Biobank Network to facilitate data and knowledge exchange, standardisation and development of standards between biobanks. German partner of BBMRI-ERIC.
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
NellyHart @B9N57c1V1K257N
0 Followers 305 Following
Canadian Association .. @PorphyriaCanada
93 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
kzp6482tnbrfa @gil9i4lwt
1 Followers 141 Following If you want to make friends, you can contact me anytime TG：https://t.co/QJbIJixXAp WS：https://t.co/YN8w1rYBww
champs @kejr35778464
230 Followers 2K Following champs ist eine Aktion um Pädiater auf die seltene Erkrankung "Mukopolysaccharidose" (MPS) aufmerksam zu machen.
Avril Daly 💚 @avrilbdaly
1K Followers 2K Following Health Equality Advocate, lover of art & anthropology, living in Dublin, working for Retina International - views are my own
Cheryl Whittleton @CherylWhit77130
120 Followers 3K Following
劉 劉 @chialiu300
9 Followers 35 Following 醫生 被稱為醫生的驕傲需要多年的努力。 一位醫生獻出了自己的生命來拯救你的生命。 “醫生。” 不僅僅是一個前綴，它還是一個超級大國。 醫生永遠是某人的英雄，某人的希望
ERCAL Enfermedades Ra.. @Ercalgroup_
7 Followers 24 Following Multi-stakeholder Foundation, consisting of expert individuals and organizations that promote and work to improve the lives of people with rare diseases
Joyce @joyce_stanley9
498 Followers 3K Following
Lori @mongellilori99
169 Followers 3K Following
王尚 @wngshng15829891
0 Followers 5 Following
CUL3 Support & Awaren.. @SupportCUL3
72 Followers 275 Following Newly formed not-for-profit patient org in support of #rare #genetic CUL3-related neurodevelopmental disorder.
IPWSO @ipwso
635 Followers 465 Following International Prader-Willi Syndrome Organisation supporting PWS associations, caregivers, professionals, people with PWS and their families worldwide.
Frank R. @SarcoidosisofLI
2K Followers 5K Following All opinions are mine only. Sarcoidosis, and Parkinson's. Published author 2 books on Amazon!
Park Jhyun @parkjhyun5
66 Followers 514 Following
ERN ReCONNET 🇪🇺 @ern_reconnet
3K Followers 890 Following 🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
Timothy Syndrome Alli.. @tsa_charity
384 Followers 1K Following We're dedicated to improving the diagnosis, treatment and care of those living with #CACNA1C-related disorders including #TimothySyndrome and #LongQT8.
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.
Di @Di13024092
36 Followers 598 Following
CSEM (UHC2030 Civil S.. @CSOs4UHC
4K Followers 540 Following CSEM raises civil society voices in @UHC2030 for inclusive & equitable #UHC policies, prioritizing the marginalized & vulnerable | #LeaveNoOneBehind | Join us!
SciBioEU @SciBioEU
57 Followers 60 Following Erasmus+ project 🇪🇺Bridging the gap between the general public and science through innovative tools and practices, with a particular focus on biobanking
canSERV @canSERV_EU
357 Followers 449 Following European #ResearchInfrastructure Cluster Providing Cutting-Edge #CancerResearch Services. Synergises with @uncan_eu @EOSC4Cancer. Tweets reflect project views.
Jade @JadeCheneau
317 Followers 4K Following My Name is Jade 🐧Penguins are amazing🐧 ⚽ Rangers are the best⚽ 🥰🌍👩❤️👩William 🌍🥰👩❤️👩20-03-2013 💙James💙10-03-2012 GBNF❤️Granny❤️ GBNF 💙Callum💙
Melvin Williams @MelvinWill98260
60 Followers 910 Following God bless me and my family and also my friends🥰🥰😍😍😍😘😘😘🇺🇸🇺🇸🇺🇸🇺🇸🇺🇸🇺🇸🇺🇸🇹🇨🇹🇨🇹🇨🇬🇧🇬🇧🇬🇧🇹🇷🇹🇷🇹🇷🇺🇸
Nirmal Khadka @NirmalKhadka7
528 Followers 1K Following Muscular Dystrophy Affected Person. Founder & chairman at @Muscular Dystrophy Organization Nepal.President at @Rare Diseases Society Nepal.
Majestic ** Lion ** M.. @MajesticLion6
1K Followers 4K Following Musicista e Scrittore dal 1988 Musician and Writer since 1988
Muhammad Amir @Muhamma88129885
15 Followers 249 Following I am very affectionate, loving, caring, down to earth, gentle and simple man to understand with, A single father
Adcum Perú @AdcumPeru
341 Followers 2K Following Somos una asociación sin fines de lucro, que busca apoyar a pacientes con enfermedades metabólicas, llamadas también Errores Innatos del Metabolismo (EIM)
Cripples Unite @UniteCrips
15 Followers 397 Following
TRPM3 Foundation @trpm3foundation
46 Followers 197 Following Patient advocacy and support for those affected by #TRPM3 #ionchannel related disorders. #RareDiseases https://t.co/O6gMucQi6R
FIRENDO @FIRENDOFrance
542 Followers 149 Following Filière #santé #maladiesrares (@FilièreMR, #FSMR) endocriniennes, pilotée et financée par le @Sante_Gouv, avec le siège à @HopitalCochin, Paris. #rarediseases
RE(ACT) Community @react_community
2K Followers 513 Following Welcome to the RE(ACT) Community, a network to share and boost research on rare diseases #crowdfunding #RAREvolution #REACTCongress - https://t.co/lhYCgq1ADA
BLACKSWAN FOUNDATION @BLACKSWANFound
2K Followers 417 Following Foundation supporting Research on #RareDiseases and #OrphanDiseases world wide @REACT_Community #RAREvolution #REACTCongress
Helen W. Hernandez @Hg_Chemistry
263 Followers 684 Following Life-long learner. Founder of KAL Reseach Initiatives, LLC. Opinions here are my own.
DrugOrphanisation @orphanisation
108 Followers 673 Following @WellcomeTrust #OrphanDrugs: High prices, access to medicines and the transformation of #biopharmaceutical #innovation @sheffielduni @ihumansheff #raredisease
Daniel A. Jaramillo-C.. @DanielJaraCalle
25 Followers 676 Following
The CGD Association o.. @CGDAofAmerica
183 Followers 585 Following The CGDAA is committed to advocating on behalf of patients and X-linked carriers by providing news and information about Chronic Granulomatous Disease.
SALMO RASKIN @RaskinSalmo
5K Followers 581 Following Médico, Geneticista Clínico e Pediatra, Doutor em Genetica, especialista em Genética Molecular pela Vanderbilt University (EUA), membro titular da SBGM e SBP.
Soph Thomas @SophThomas5
330 Followers 2K Following
PKU Association IE @PKU_Ireland
1K Followers 3K Following PKU Association of Ireland #SUPPORTINGPKU #LowProtein PKU Awareness in Ireland Registered Charity Number (RCN) 20202487
Amelia Vale @AmeliaVale_
69 Followers 86 Following Film director, producer and journalist. Cycling, kayaking, Hispanic culture and language fan.
The Ehlers-Danlos Soc.. @TheEDSociety
24K Followers 6K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Mercy Rophina @mercy_rophina
917 Followers 3K Following Graduate Student, Computational #Immunology & #Rare blood group #Genomics, Vinod Scaria lab, @IGIBsocial, Alumnus #PSGTech, Soulful Mandala artist✨
Sarah Clark @sarah_clark_84
990 Followers 3K Following Patient Expert. Studying MSc Neuropsychology; Writer; Photographer; Yogi; Aspiring Floating Researcher. ❤️🐱#hEDS #MALS #MCAS #Dysautonomia #LateDiagnosedAutism
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.
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
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
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
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.
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
EpiCARE @EpiCARE_ERN
3K Followers 469 Following European Reference Network for Rare and Complex Epilepsies. We are 50 specialist hospitals in 24 European countries with expertise in epilepsy & research.
ERN EuroBloodNet @ERNEuroBloodNet
2K Followers 412 Following ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases
@ERN_RND 🧠 @ERN_RND
2K Followers 759 Following European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: https://t.co/nowjhyNigm
CNAG @cnag_eu
5K Followers 1K Following The Centro Nacional de Análisis Genómico carries out projects in genome analysis to improve people’s health and quality of life #genomics #personalisedmedicine
ECRIN @ECRIN_ERIC
2K Followers 484 Following ECRIN's mission is to support the conduct of multinational clinical research in Europe
BBMRI-ERIC @BBMRIERIC
3K Followers 2K Following Pan-European network to support biobanking and biomolecular research. Co-funded by 🇪🇺 within @EU_H2020 Research Infrastructures programme
Solve-RD @Solve_RD
2K Followers 402 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.
Fondazione Telethon @Telethonitalia
89K Followers 2K Following La Fondazione Telethon ETS (Ente del Terzo Settore) è nata nel 1990 per rispondere all'appello di pazienti affetti da malattie rare.
Irene Norstedt @IreneNorstedt
5K Followers 4K Following Director @EU_Commission 🇪🇺 'People, Heath and Society' Directorate, DG Research & Innovation @EUScienceInnov @HorizonEU #EUHealthResearch #UnionOfEquality
EUScience&Innovation�.. @EUScienceInnov
134K Followers 884 Following Official account of DG Research & Innovation @EU_Commission, managing @HorizonEU & implementing the EU Commission's R&I strategy. Follow also @lemaitre_eu
VASCERN @vascern
2K Followers 636 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
ern euro_nmd @euro_nmd
2K Followers 738 Following Building bridges and breaking barriers in rare neuromuscular diseases.
Horizon Europe🇪�.. @HorizonEU
181K Followers 2K Following Official DG Research & Innovation account for EU's #HorizonEU research & innovation programme Follow @EUScienceInnov & @lemaitre_eu
David Josef Volodzko @davidvolodzko
22K Followers 3K Following Words in @thefp, @nymag, @foreignpolicy, @thenation, @wsj, @bloomberg, @forbes | author of a newsletter on political extremism at https://t.co/3RImsDqWQ6
Carl Bildt @carlbildt
785K Followers 3K Following Co-Chair European Council on Foreign Relations @ecfr. World Health Organization Special Envoy for ACT-Accelerator @who @ACTAccelerator. På svenska på @cbildt.
Assistant Secretary L.. @HHS_ASGA
3K Followers 31 Following Loyce Pace, MPH. HHS Assistant Secretary for Global Affairs. Building back healthier at home and abroad. Privacy policy: https://t.co/yGiwFtd9LM
Saima Wazed @drSaimaWazed
12K Followers 94 Following Public Health. @WHOSEARO Regional Director. Keen nature photographer.
Avril Daly 💚 @avrilbdaly
1K Followers 2K Following Health Equality Advocate, lover of art & anthropology, living in Dublin, working for Retina International - views are my own
Rob Yates @yates_rob
11K Followers 2K Following Universal Health Coverage #UHC saves lives, stimulates growth, reduces poverty and builds nations. Political commitment + PUBLIC financing are the keys to UHC.
ERN ReCONNET 🇪🇺 @ern_reconnet
3K Followers 890 Following 🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
Timothy Syndrome Alli.. @tsa_charity
384 Followers 1K Following We're dedicated to improving the diagnosis, treatment and care of those living with #CACNA1C-related disorders including #TimothySyndrome and #LongQT8.
CHAI @CHAI_health
42K Followers 375 Following Our mission is to save lives and improve health outcomes by enabling the government and private sector to strengthen and sustain quality health systems.
Nirmal Khadka @NirmalKhadka7
528 Followers 1K Following Muscular Dystrophy Affected Person. Founder & chairman at @Muscular Dystrophy Organization Nepal.President at @Rare Diseases Society Nepal.
Bi-khim Hsiao 蕭美�.. @bikhim
171K Followers 444 Following Taiwan Ambassador, Representative & Cat Warrior in the US
Chatham House Global .. @CHGlobalHealth
8K Followers 1K Following Our research examines how global health challenges manifest themselves as international affairs problems.
UN GA President @UN_PGA
312K Followers 793 Following Official account of Dennis Francis, President of the 78th session of the United Nations General Assembly. Instagram: https://t.co/yzc1jkcRJa
María Fernanda Espin.. @mfespinosaEC
167K Followers 300 Following 73rd President #UNGA 🇺🇳 Minister Foreign Affairs & Defense 🇪🇨 Member & CEO @GWLvoices @UHC2030 @watercommongood @UNAOC @CrisisGroup @WomeninGH
GlobalSkin @IADPO
3K Followers 713 Following The International Alliance of Dermatology Patient Organizations is a global voice for skin patient-centred research, advocacy & support.
Anshu Banerjee @ABanerjeeWHO
2K Followers 91 Following Director, Maternal, Newborn, Child and Adolescent Health & Ageing @WHO. Tweets are my own.
CEPCAL @CEPCAL_LATAM
284 Followers 78 Following Colaborativa para Enfermedades Poco Frecuentes en el Caribe y América Latina (CEPCAL) is a regional initiative working towards improving the lives of patients
MENA Congress for Rar.. @menararedisease
107 Followers 197 Following MENA Congress for Rare Diseases was established to serve and support people with rare diseases in Middle East and North Africa (MENA) region.
SALMO RASKIN @RaskinSalmo
5K Followers 581 Following Médico, Geneticista Clínico e Pediatra, Doutor em Genetica, especialista em Genética Molecular pela Vanderbilt University (EUA), membro titular da SBGM e SBP.
@pqmd @pqmd
339 Followers 238 Following PQMD is a unique alliance of non-profit and corporate organizations committed to bringing measurable global health impact to under-served and vulnerable people
Vittoria Carraro @LucyintheskyLu
203 Followers 378 Following Policy officer @EU_Health. Social and health policies. Art enthusiast. Views are my own.
UHC2030 @UHC2030
33K Followers 4K Following The global movement to build stronger health systems for universal health coverage. #UHC #UHC2030 #UHCHLM #HealthForAll RT ≠ endorsement.
Geneva Health Files @FilesGeneva
4K Followers 3K Following Investigating power & politics in the capital of global health. Reported, Curated & Published by @pretpat Sign up! https://t.co/8B5KQatx2s Support: https://t.co/eGC65rdSEo
Prof Peter Hotez MD P.. @PeterHotez
452K Followers 8K Following Vaccine Scientist-Author-Combat Antiscience @bcmhouston Professor Pediatrics Molecular Virology, @bcm_tropmed Dean, @TexasChildrens Chair in Tropical Pediatrics
Shirley Xue Li @snowly12191
226 Followers 186 Following Assistant Professor @HKUMed; passionate at #real-world outcome research #health technology assessment #decision analytics
Diagnostics Commissio.. @DiagnosticsCom
705 Followers 374 Following @TheLancet Commission on Diagnostics - Addressing the importance of pathology & radiology for delivering UHC #DiagnosticsCommission. Read the report now ⬇️!
Dr. Ayoade Alakija @yodifiji
44K Followers 131 Following Chair Board @FINDdx Special Envoy @WHO @ACTAccelerator Co-Chair G7 Impact Investment Initiative on Global Health. Wife, Mother of Gorgeous Olympian. 🐕 Mum
Aux pas du coeur @auxpasducoeur
17 Followers 37 Following Association à but non lucrative ayant pour mission de faire reconnaitre les maladies rares en C.I #raredisease Cote d'Ivoire. #Sensibiliser#Plaidoyer#Recherches
Maria Cavaller Bellau.. @maria_cavaller
292 Followers 594 Following Patient Engagement & Therapeutic Development Director @eurordis 🇪🇺 Pharmacist 💊 Global Market Access & Health Economics #rarediseases
International Univers.. @UHC_Day
11K Followers 2K Following Official handle of #UHCDay, the annual rallying point every 12 December for advocates worldwide calling for strong health systems that leave no one behind.
ICD11 @WHOICD11
1K Followers 54 Following World Health Organization: International Classification of Diseases - 11th Revision
⿻ Audrey Tang 唐�.. @audreyt
290K Followers 108 Following 1st digital minister in 🇹🇼 & 1st 🏳️⚧️ minister in the 🌐. pronouns: */*
APARDO @APARDO_official
33 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.
Zach Brennan @ZacharyBrennan
10K Followers 1K Following Senior Editor, Endpoints News - covering the FDA, Capitol Hill, regulatory policy, and all things biotech/pharma - reach me at [email protected]
Mike Graglia 🌻 @JMGraglia
7K Followers 3K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Peter Kalmus @ClimateHuman
339K Followers 13K Following NASA climate scientist. Arrested for defending Earth. @ClimateAd, @EarthHeroOrg. Opinions mine. #EmergencyMode
Rare Disease and Orph.. @OAE_RDODJ
441 Followers 2K Following Rare Disease and Orphan Drugs Journal(RDODJ) is an international peer-reviewed, open access, online journal.
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
International Society.. @ISNSNeonatal
112 Followers 4 Following This society is aiming to advance screening for neonatal and infant sicknesses and disorders, worldwide.
Critical Path Institu.. @CPathInstitute
1K Followers 178 Following C-Path leads collaborations that accelerate drug development, advancing better treatment for people worldwide.
Carine Alsokhn @carinesokhn
62 Followers 87 Following Technical Officer (Classification of Diseases ICD, ICHI and ICF), Data Analytics and Delivery for Impact Division at World Health Organization
Leire Solis @LeireSolis
505 Followers 210 Following Patient advocate @ipopi_info, interested in Universal Health Coverage #UHC, primary immunodeficiencies #PIDs, #rarediseases - all views are personal
Marshall Summar, M.D. @genedocrare
415 Followers 107 Following I have the pleasure of running the Rare Disease Institute at @ChildrensNatl . I work with Children and Adults with rare genetic conditions.
Remember The Girls @remember_girls
2K Followers 838 Following Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
Alba Ancochea @alba_ancochea
1K Followers 995 Following Transformadora Social. Pasión por la ciencia y la innovación.
PHCPI - Stronger With.. @ImprovingPHC
4K Followers 1K Following A partnership that helped countries measure & strengthen #PrimaryHealthCare. Advocated for more & better investments on the road to #HealthForAll.
Ines Hernando @inesernando
419 Followers 771 Following European Reference Networks and Healthcare Director @eurordis. Views expressed are my own |
HTAi @HTAiOrg
5K Followers 824 Following #HTAi is the international society that supports and promotes the development, communication, understanding and use of #HTA around the world.
richard horton @richardhorton1
102K Followers 1K Following welcome to a permanent attack on the present
Improving access to medicines requires solidarity, transparency and sustainability. WHO/Europe’s new Access to Novel Medicines Platform #WHONMP promotes dialogue & collaboration to improve #access2meds in the Region, including its 11 smallest countries. bit.ly/4aMhnvZ
Excited to share patient leaders' collective work to catalyse the global patient movement towards inclusion in all health decision-making💪@LaraBloom @Brianhemophilia @DerickOMisteal @yann_eurordis @jk_austin @NABedlington @StefanGijssels @nbrooke @NHCouncil @IAPOvoice #ODRD2024
Aula Magna at Sapienza University of Rome is a spectacular setting for this year's Human Genome Meeting. Lunch was wonderful too, accompanied by comments from the waiters at all the stranieri asking for caffe lungo. It was espresso or nothing, and milk if you could find it. 😀
I reached a small milestone today. 😀 Starting off the celebrations with a webinar for our @Solve_RD collaborators from @_ERNRITA and @EpiCARE_ERN to help with the interpretation of results from CNV re-analysis of their exome sequencing data. We've resolved more RD cases!
Holy f'ing sh*t! This is a big deal! Thank you to Mackenzie Scott and her amazing foundation for lifting up ALS and @iamalsorg. Thank you, thank you, thank you!
I AM ALS is humbled to have been selected as an awardee of Mackenzie Scott’s #YieldGivingOpenCall. We were gifted an incredible $2 million – the largest single gift in I AM ALS’ history! Read the full press release: iamals.org/updates/i-am-a… (1/3)
Thank you Judy nature.com/articles/s4358… #JudyCampisi #cellularsenescence #obituary #tribute
On #InternationalWomensDay2024, RDI honors women living with rare diseases and the mothers, daughters, wives & other family members who care for #PLWRD and calls upon policy makers to ensure they can access the services and support they need without financial hardship.
The #EURORDISAwards2024 begin by paying tribute and saying thanks to @yann_eurordis, who is attending his last Black Pearl Awards as our Chief Executive Officer! Yann Le Cam steps down as our Chief Executive Officer next month. Thank you for everything, Yann.💓💫
The EURORDIS Members Award goes to @InterDEBRA, for their incredible work providing much-needed support for members of the rare disease community affected by conflicts and natural disasters, particularly in Ukraine, Türkiye, and Syria.🌍🤝 #EURORDISAwards2024
Day 3 of 4 of the #RareX2024 conference I'm so loving this conference. Rich conversations all around 😀 Pictured here with Trudy, our Zimbabwean counterpart and my friend 💕 I ❤️ 🌍
The just concluded #RareX2024 conference was beyond amazing!!! We met, networked, bonded, ate a lot and got to map out what the needs of the rare disease community in Africa are. Looking forward to the future that is here. #RareDiseaseKE
Compassionate Fatigue: A very important topic being discussed at the #RareX2024.. one that is sadly not talked much in our (caregiving) community 😢 We need to talk more .. we need to embrace that caregivers do tired .. we need to help them too!
@cmutena livening up the stage at #RareX2024 while presenting on the African Rare Disease Alliance - looking forward to what #ARDA will accomplish! 🙌🏻🌍
A strong political divide is emerging between young men and women in many countries: on.ft.com/3Hv2Qs6
The 154th session of WHO's Executive Board #EB154 appoints Regional Directors for @WHOEMRO, @WHOSEARO and @WHOWPRO regions. Congratulations to Dr @HananBalkhy, @drSaimaWazed and Dr Saia Ma’u Piukala! bit.ly/4b7DhuE
It's #TakeoverTuesday with @rarediseasesint! With #RareDiseaseDay just 44 days away, join us in a quiz to test your knowledge. How did you fare? Did you score 5/5? Share your results in the comments! 👇 Visit our website & learn more: rarediseasesinternational.org
"An inquiry into power is the only way to answer questions at the heart of global health inquiry: why do some bodies survive, and some don’t?" Congrats @thewrittenro on your new book! taylorfrancis.com/books/oa-mono/…
➡️In partnership with @ERN_RND & @EANeurology, we are running a series of webinars every Thursday in January. This month’s topic is #RareMuscleDiseases. Sign up here for this unique opportunity 👉bit.ly/47SUUMX
🚨 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…
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