BLACKSWAN FOUNDATION @BLACKSWANFound
Foundation supporting Research on #RareDiseases worldwide. This channel is no longer fed; follow us on Bluesky https://t.co/sWzt2hczRg blackswanfoundation.ch Switzerland Joined February 2010-
Tweets998
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Following394
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Likes379
Our Foundation decided to leave X because of misinformation and toxic discourse on the platform. You can find us at #bluesky. This channel is no longer fed. bsky.app/profile/rarevo…
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BLACKSWAN FOUNDATION retweeted
Going to @irdirc conference and #REACTCongress is like going to an extended family reunion, in a good way. It’s the best community! And @EJPRareDiseases m&m’s are just irresistible!
BLACKSWAN FOUNDATION retweeted
Terrific presentations in #diagnostics, #gene, #celltherapy, and new technologies, but how to bring treatments to #raredisease patients? The #REACTCongress 2023 will explore it with the Last session of the #REACTCongress 2023, “Systems thinking towards #access.” #RAREvolution
Just posted a photo instagram.com/p/Cp5QVOKMAr3/…
BLACKSWAN FOUNDATION retweeted
Day 3 and time for the session on #Gene and #Cell #therapy, and we start with the outstanding presentation of Guillaume Canaud #REACTCongress #irdirc #ejprd #blackswanfoundation #RAREvolution
#RAREvolution, great to see you @ClaudioCarta_4
#RAREvolution, great to see you @ClaudioCarta_4
BLACKSWAN FOUNDATION retweeted
Day 1/4 of the RE(ACT) Congress & IRDiRC Conference: ✅ Meet Dr. Olivier Menzel (@OlivierMenzel) Chairman & Founder of the Blackswan Foundation on the first day of the event!
BLACKSWAN FOUNDATION retweeted
It's time for the opening ceremony at the #REACTCongress with Ruxandra Draghia-Akli, the Queen 👑 and co-founder of @irdirc #irdirc #ejprd #blackswanfoundation #RAREvolution
Happy to have you here @ Of note, the concept of the RE(ACT) Congress has been created by the great designer @demianconrad
Happy to have you here @ Of note, the concept of the RE(ACT) Congress has been created by the great designer @demianconrad
BLACKSWAN FOUNDATION retweeted
This is a start for the #REACTCongress 2023 in collaboration with @irdirc and @EJPRareDiseases @BLACKSWANFound #irdirc #ejprd #blackswanfoundation #RAREvolution
Everything is set up for the 7th RE(ACT) Congress and 5th IRDiRC Conference in #Berlin @irdirc @EJPRareDiseases @react_community #raredisease #research #RAREvolution
BLACKSWAN FOUNDATION retweeted
Happy New Year, 33% discount for the first 15 registrations! Register Now!
Happy New Year, 33% discount for the first 15 registrations! Register Now!
🎁🎄 Xmas gift! Get 25% off your registration fee for the RE(ACT) Congress & IRDiRC Conference. 🏷️Use the coupon "REACTXMAS". 🚨(Discount valid until December 25th) ℹ️ Speakers, registration, & more: react-congress.org #raredisease #RAREvolution #REACTCongress
BLACKSWAN FOUNDATION retweeted
🚨At the RE(ACT) Congress & IRDiRC Conference, you'll get the opportunity to see @irdirc members Anneliene Jonker & Marc Doom's presentation during the « Therapeutic Development, innovative clinical trials, precision medicine » session Registration & more: bit.ly/2PXAgGu
🚨Only 3 days left before the end of early bird registration (lower fee!) at the 7th RE(ACT) Congress and 5th IRDiRC Conference, held in person next March 2023 in Berlin 🇩🇪 . ℹ️More information: react-congress.org
Check out Nord’s breakthrough summit on rare diseases and orphan products. …volutionmagazine.us13.list-manage.com/track/click?u=… #NORD #rareresearch instagram.com/p/CjkvbL2DKhu/…
Great event happening. Register here: …volutionmagazine.us13.list-manage.com/track/click?u=… #beaconforrarediseases #DrugRepo22 instagram.com/p/CjkvCCksYZ6/…
EURORDIS-Rare Disease... @eurordis
32K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Rare Disease Day @rarediseaseday
42K 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
ERDERA @ERDERA_org
4K Followers 2K Following The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Effie Parks @OnceUponAGene
6K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
ProRaris @ProRaris
397 Followers 109 Following ProRaris - Alliance des Maladies Rares en Suisse ProRaris - Allianz Seltener Krankheiten Schweiz ProRaris – Alleanza delle Malattie Rare in Svizzera ProRaris.ch
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Rare Diseases Ireland @RareDiseasesIE
4K Followers 1K Following Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following making #rarediseases an everyday conversation https://t.co/kZWskP9Ojj
@ERN_RND 🧠 @ERN_RND
3K Followers 716 Following European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: https://t.co/nowjhyNigm
Solve-RD @Solve_RD
2K Followers 368 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.
Heidi Grabenstatter @PatientIntv
2K Followers 2K Following RDCA-DAP Scientific Director @CPathInstitute, patient advocate, neuroscientist, and proud mom. Opinions are my own.
CORD @raredisorders
5K Followers 695 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
Stephanie Fischer @RarePOV
7K Followers 5K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
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.
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
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Begonya Nafría @BegonyaNafria
3K Followers 5K Following @CovidWarriors Patient Engagement in Research Coordinator at @SJDbarcelona_es Coordinator of Share4Rare and KIDS Barcelona. PhD student. All views my own
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8 Followers 181 Following
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12 Followers 186 Following
Mirso @Mirso93673
32 Followers 1K Following
Vooxar @Vooxar1512
28 Followers 1K Following
susan @susan5085540010
10 Followers 193 Following Pioneer Wealth: Prof. Matthew’s AI + finance pros boost profits! Free 1st month. AI scans data, experts guide stocks/crypto. Click to join now!
Christelle N. Dzesse ... @christelledzes
197 Followers 1K Following materials chemist, MOFs field with applications in drug delivery, water treatment and gas sorption such carbon dioxide, OWSD alumni,Techwomen fall 2022
Innerspace @innerspacelife
9 Followers 108 Following Clinical Life, Performance Strategist & Psychotherapy Practise
Muhammad Nurudeen @babsdegentle
563 Followers 3K Following PhD @Salford;Research fellow@KWASU Interests - Anatomy/Cell & Mol. Biology/Genomics of Blood Cancer & SCD) Advocate @scaf-ng @haima_health Genetic counsellor
Fatihin Fedaisi @Fa57516Fedaisi
247 Followers 6K Following
Sterewth @SterewthR2tonO
17 Followers 801 Following
Canadian Rare Disease... @CanadianRDN
355 Followers 819 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Arman Cakar @Arman_Cakar1
32 Followers 273 Following Neuromuscular Unit, Istanbul Faculty of Medicine, Hon Research Fellow @ UCL Queen Square IoN
Lung Precision Medici... @LpmDbmr
31 Followers 137 Following The Lung #PrecisionMedicine Program @DBMR_UniBe unites experts from @unibern & @inselgruppe to combat lung diseases and improve lives. https://t.co/5Y4XmVbnNV
Janine Gote-Schnierin... @schniering_j
370 Followers 655 Following Research group leader at the Lung Precision Medicine Program @LpmDbmr @unibern. Former RESPIRE4 ERS/Marie Curie Postdoc @SchillerLab
Aldo Dennison @AldoDennis61012
0 Followers 6 Following
Nerea Viana Alzola @Nerea_nva
467 Followers 1K Following #PhD candidate_ #Urban #Sociology @IRS_SDS ~ #Europe & #Asia ~ #Ethnography • #Cities, #Inclusion, #Hybrid, #Comparison over #Time, #Wellbeing, #Partnerships
Himali Vyas @leodoc247
31 Followers 274 Following A Doctor, a classical dancer, an anchorwoman, basically the artsy farsty one, who loves to read and happens to be a leo!
connie needham @ConnieNeed726
481 Followers 4K Following TALENT AGENCY TEACHER PROFSSIONAL DANCE CHA CHA BALLET PLOE BALL ROOM DIRTY DANCEING TAP HOPHOP ROCK ROLL MORE ORANGE COUNTY HOLLYWDOOD CA CALL18884058901
Rareminds @RaremindsUK
948 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
Patient73 Foundation @Patient73org
120 Followers 340 Following At P73, our focus is on creating a comprehensive ecosystem of communications and tools dedicated to #RareDiseases #EnfermedadesRaras
Plug - Thomson ☘️... @BostonCho29029
45 Followers 527 Following master in business administration in the USA 🇺🇸 @Florida ☘️☘️🍄🍄. Weed plug
Angela @woollycat808
370 Followers 966 Following Local girl from O'ahu with a love of politics, animals, and the environment. Advocate for the rare disease, LGBTQ+, and chronic illness communities.
Gema Valera Vázquez @Gema_ValVaz
283 Followers 457 Following Biologist 💚. Comms Officer at @InfrafrontierEU | #nature #people #hiking #cycling #dancing #crafting #cooking | Mother of plants - Views r my own
Tim Buckinx @timbuckinx
198 Followers 483 Following
Cripples Unite @UniteCrips
18 Followers 384 Following
Meelis Joost @MeelisJoost
120 Followers 271 Following Chairman at Estonian Chamber of People with Disabilities, Board member of Estonian Agrenska Foundation, Former Member of EESC
Neeraj Singh BJP @NeerajSingj2
346 Followers 1K Following परख से परे है, ये शख्शियत मेरी। मैं उन्ही के लिए हूं, जो समझे कदर मेरी।
Guillaume Canaud (MD,... @CanaudLab
2K Followers 670 Following Translational medicine. Hôpital Necker Enfants Malades/Université Paris Cité.
kalpana panneerselva @Kalpana_PS
50 Followers 716 Following
TRPM3 Foundation @trpm3foundation
54 Followers 185 Following Patient advocacy and support for those affected by #TRPM3 #ionchannel related disorders. #RareDiseases https://t.co/O6gMucQi6R
Rare Disease Clinical... @rare_trial
921 Followers 1K Following HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.
Rett Dad @RettDad
1K Followers 1K Following In addition to teaching my daughter about the world, I am teaching the world about my daughter and others with Rett syndrome.
AQ-Trials @AQtrials
572 Followers 4K Following A transfomative operating platform for clinical trials at research sites( SaaS) : Digitally Empowering Researchers To Deliver Research
rona smith @RonaMarieSmith
124 Followers 340 Following
Nicolas Diamond @Nickydiamz
0 Followers 102 Following
Susi Wehrli @WehrSue
122 Followers 297 Following Working with real unicorns in the context of my Itinerare PhD @KispiZuerich 🦄 Interested in #raredisease #paediatricpsychlogy #healthcareaccess #chronicpain
Tom Wright @TWright_GenomeX
443 Followers 540 Following 🧬Clinical Genetics SpR/Resident (OOPR) | PhD Researcher @FBMH_UoM @mft_iMRare @ManchesterBRC #RareConditions #Genomics #MentalHealth |💗Husband/Dad/Son/Sib🎭🎨
jose ballarin @joseballarin1
66 Followers 462 Following
أديب @Adeeb_Ba_Aqeel
354 Followers 1K Following
Melissa Haendel @ontowonka
2K Followers 2K Following At the intersection of biology and everything else. #AttributionForAll. #UnitedAgainstHate #raredisease #FactsMatter, also at @[email protected]
Barbara @Barbara07801814
6 Followers 90 Following
Inês Alves @InesA_Beyond
157 Followers 219 Following People’expert on Skeletal Dysplasia, CHRC-University of Évora, COMP-EMA member, ERN BOND ePAG, European Rare Bone Forum board member
MediPaCe @medipace
81 Followers 314 Following Patient Engagement & Patient Research Company with human-centric & inclusive approach. Only equal partnership w/ patients can bring the most impactful outcomes.
marisa durfee @kikucamimama
35 Followers 477 Following
Carola Fischer @carolakfischer
34 Followers 59 Following
GNAO1 España @Gnao1Espana
279 Followers 562 Following ONG de familias por la investigación de mutaciones en GNAO1. #Epilepsy #Movementdisorder. 💙💜👩🏻🔬👨🔬🤞🏾🤞
ekin @saykolojimbozuk
37 Followers 478 Following
EURORDIS-Rare Disease... @eurordis
32K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Rare Disease Day @rarediseaseday
42K 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
ERDERA @ERDERA_org
4K Followers 2K Following The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
ProRaris @ProRaris
397 Followers 109 Following ProRaris - Alliance des Maladies Rares en Suisse ProRaris - Allianz Seltener Krankheiten Schweiz ProRaris – Alleanza delle Malattie Rare in Svizzera ProRaris.ch
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
AnnemiekeAartsma-Rus @oligogirl
3K Followers 456 Following Translating science from bench to bedside and from jargon to lay language
Rare Diseases Ireland @RareDiseasesIE
4K Followers 1K Following Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following making #rarediseases an everyday conversation https://t.co/kZWskP9Ojj
@ERN_RND 🧠 @ERN_RND
3K Followers 716 Following European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: https://t.co/nowjhyNigm
Solve-RD @Solve_RD
2K Followers 368 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.
CORD @raredisorders
5K Followers 695 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
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.
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
ERN ReCONNET 🇪🇺 @ern_reconnet
3K Followers 883 Following 🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
EU One Health @EU_Health
88K Followers 3K Following The official account of @EU_Commission Directorate-General for Health & Food Safety (SANTE): #OneHealth: connecting health of humans, animals & plants 👤🐾🌱
EU Medicines Agency @EMA_News
114K Followers 333 Following Latest news from the European Medicines Agency, the European Union agency responsible for the evaluation and supervision of medicines. RTs ≠ endorsement.
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.
FEDER | Enfermedades ... @FEDER_ONG
39K Followers 8K Following 👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 442 organizaciones de pacientes y a 1.546 patologías poco frecuentes
Maria Cavaller Bellau... @maria_cavaller
300 Followers 598 Following Patient Engagement & Therapeutic Development Director @eurordis 🇪🇺 Pharmacist 💊 #regulatory #ccess #rarediseases #globalhealthpolicy
Mary Wang @marywangCM
507 Followers 703 Following #RareDiseases, global #access; care, diagnosis, medicines. My own tweets
Myrovlytis Trust @myrovlytis
240 Followers 340 Following Medical research charity driven by our ambition to cure rare diseases We manage @BHD_Foundation & @OsteosarcomaNow #RareDisease #rarecancer
Christina Waters @RareWaters
95 Followers 161 Following
RareBoost @RareDiseasesIBG
192 Followers 51 Following The RareBoost ERA Chair project aims to establish Izmir Biomedicine and Genome Center (IBG) as a center of excellence in rare and undiagnosed diseases research
ACURARE @ACURARE1
484 Followers 224 Following Acıbadem Üniversitesi Nadir Hastalıklar ve Yetim İlaçlar Uygulama ve Araştırma Merkezi
Irish Haemochromatosi... @IrishHaemAssoc
1K Followers 3K Following A life-changing #health #advocacy support group for haemochromatosis #ironoverload patients/families. Raising awareness, promoting early diagnosis & treatment
David Pearce @DrDavidPearce
720 Followers 132 Following President of Innovation & Research for Sanford Health. Chair, International Rare Disease Research Consortium (IRDiRC) Opinions tweeted are my own.
International Cancer ... @united4cancer
6K Followers 2K Following ICPC is dedicated to promoting innovative and timely access to cancer care for patients all over the world 🌎
SamebutDifferent @SBDRareProject
2K Followers 3K Following Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
ECRIN @ECRIN_ERIC
2K Followers 460 Following ECRIN's mission is to support the conduct of multinational clinical research in Europe
ジャン＝エリッ... @EUAmbJapan
17K Followers 1K Following 駐日欧州連合（EU）大使の公式アカウント Official account of the 🇪🇺 EU Ambassador to Japan 🇯🇵 EU Delegation to Japan/駐日欧州連合 (EU）代表部: @EUinJapan
Horizon Europe 🇪�... @HorizonEU
179K Followers 2K Following Funding opportunities, projects & events from the EU's Research & Innovation Programme. Follow also @EUScienceInnov, @EZaharievaEU & @lemaitre_eu
ERN-EYE @ErnEyeEU
1K Followers 210 Following https://t.co/hGZjQCukos - ERN-EYE is a European Reference Network dedicated to Rare Eye Diseases.
ERN-ITHACA @ERNIthaca
1K Followers 370 Following European Reference Network on congenital malformations and rare intellectual disability (ERN-ITHACA).
ERN eUROGEN @ERN_eUROGEN
1K Followers 536 Following Improving diagnosis, treatment & care for rare uro-recto-genital diseases & complex conditions needing highly specialised surgery. Funded by the EU.
ERN-LUNG @ErnLung
1K Followers 1K Following
BBMRI-ERIC @BBMRIERIC
3K Followers 2K Following Supporting biobanking and biomolecular research. 🦋 https://t.co/6dW60diiek 🖇️ https://t.co/Ujyqz4mdEL
Anne Carpenter, PhD @DrAnneCarpenter
22K Followers 2K Following Discovery in images. Enthralled by science. 5 kids. She. SAB Recursion, Quiver. Founder SyzOnc. opinions my own. https://t.co/CQCHnSAc9M
INFRAFRONTIER @InfrafrontierEU
879 Followers 463 Following INFRAFRONTIER is the European Research Infrastructure for Modelling Human Diseases
Ontario Genomics @ontariogenomics
6K Followers 2K Following Our Vision: Healthy Lives, Healthy Economy, Healthy Planet Through Collaborative Genomics Innovations. Instagram: ontariogenomics LinkedIn: Ontario Genomics
NCATS @ncats_nih_gov
16K Followers 657 Following Official account. https://t.co/E0jyoPAqWA https://t.co/5jpXb0jIER engagement ≠ endorsement
Lochmüller Lab @LochmullerLab
789 Followers 324 Following Hanns Lochmüller's research lab in Ottawa, Canada. Clinical and basic research in neuromuscular and rare disease. Tweets by Hanns and team.
Show Me Your Genes @Showmeyourgene
171 Followers 250 Following Show Me Your Genes is focused on helping families find a proper diagnosis for loved ones in need through genetic testing. We will listen when others won’t.
Foresight in Rare Dis... @rare2030
1K Followers 437 Following Preparing a better future for people living with rare diseases. For more info [email protected]
FMF & AID Global Asso... @FMFandAID
389 Followers 352 Following The FMF (Familial Mediterranean Fever) & AID (autoinflammatory diseases) is a non-profit umbrella organization registered in Zurich, Switzerland.
ERN GUARD-Heart @ERNGuardHeart
580 Followers 207 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
Lady of Lyme @LadyofLyme
13K Followers 6K Following On a crusade to find health with #Lyme Disease - Advocate/Writer. Bylines @TheMightySite @ProHealth Lover of dogs & connoisseur of chocolate
European Society of H... @eshgsociety
6K Followers 895 Following
theMteam @theMteamcares
87 Followers 186 Following A #BestBuddiesChallenge team welcoming new runners & cyclists! 2020 fundraising goal: $150K for @BestBuddies & #disabilityinclusion. Sign up / donate!👇
Making Change @Makingchange4
334 Followers 595 Following Making Change 4 Children is a Nonprofit organization that actively works toward unique changes in our healthcare system for children with chronic illnesses.
Share4Rare @Share4Rare
2K Followers 960 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
Lisa Phelps @lmphelps
13 Followers 27 Following
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
EFPIA @EFPIA
25K Followers 4K Following EFPIA is the voice of the research-based pharmaceutical industry in Europe #WeWontRest #TeamVaccines https://t.co/y1FLniUcoT
Swiss Global Health @BAG_INT
2K Followers 228 Following Bridging🇨🇭Swiss Public Health & 🌍 Global Health @BAG_OFSP_UFSP
Nathalie Moll @NathalieMoll
4K Followers 1K Following Tweeting as Director General of @EFPIA Retweet # endorsement
CDG UK @UK_CDG
646 Followers 731 Following CDG UK is the national charity supporting patients and families affected by Congenital Disorders of Glycosylation. Registered Charity Number 1191342.
EpiCARE @EpiCARE_ERN
3K Followers 456 Following European Reference Network for Rare and Complex Epilepsies. We are 50 specialist hospitals in 24 European countries with expertise in epilepsy & research.
ERN TransplantChild @TransplantChild
744 Followers 418 Following European Reference Network on transplantation in children
EURACAN @ERN_EURACAN
918 Followers 348 Following #EURACAN is the #ERN for #rare adult solid #cancers: 1 of the 24 #EuropeanReferenceNetworks working on a range of thematic issues. 🔗 https://t.co/nYHhrtwCqg
MetabERN @Metab_ERN
2K Followers 377 Following The European Reference Network for Hereditary Metabolic Diseases. A better future for Rare Inherited Metabolic Disease patients. RT ≠ Endorsement. #Together
Office for Rare Condi... @ORCGlasgow
2K Followers 1K Following The Office for Rare Conditions aims to raise awareness of rare conditions, enhance the quality of care provided & promote participation in multi-centre research
Professor Lara Bloom @LaraBloom
7K Followers 1K Following President & CEO @TheEDSociety•Prof of Practice Patient Engagement & Global Collaboration•Rare & Chronic Disease Advocate•🏳️🌈Gay•She/Her• Views my own
Yann Le Cam @yann_eurordis
1K Followers 247 Following CEO @eurordis, #raredisease #patient advocate. Member of @rarediseasesint council. Tweets are my own.
Rick Thompson @RickSThomp
714 Followers 305 Following Evolutionary biologist, turned CEO for Beacon: for rare diseases. All views my own.Trends for United States
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