Patient Worthy @PatientWorthy
We're a resource for engaging, informative content and rare patient news, well done. patientworthy.com Joined April 2015-
Tweets25K
-
Followers8K
-
Following7K
-
Likes15K
Radio Presenter Discusses Getting Diagnosed with Dystonia bit.ly/3UGb9J4 #Dystonia #RareDisease @dmrf
Rare Meningococcal Disease May Present with Unique Symptoms bit.ly/4bcxP8U #MeningococcalDisease #CDC #Septicemia #BacterialMeningitis
April 30th is the First-Ever AMKD Awareness Day. Here's What You Need to Know bit.ly/3vNpklI #Apol1MediatedKidneyDisease #AMKD #APOL1Aware #ChronicKidneyDisease #CKD @KidneyFund
Thank you to @JenniferMAngus for sharing her #MultipleSclerosis story on our podcast! Good luck in your #ParaDressageRider competitions this year! Listen here: bit.ly/3QjRpIq #MS #HSCT #Disability
Study of the Week: Brain Acidity Linked to a Wide Range of Neurological Diseases bit.ly/3UyPv9r #StudyOfTheWeek #Alzheimers #Autism #Depression #Schizophrenia #BipolarDisorder
Kindler Epidermolysis Bullosa Characterized by Oral and Dental Abnormalities bit.ly/49WVFEO #EpidermolysisBullosa #EB #KindlerEpidermolysisBullosa #KindlerEB @debraOfAmerica
Study of Bronchial Asthma Reveals Cause of Cell Damage bit.ly/3UCkfGz #Asthma #BronchialAsthma #AsthmaResearch
New Podcast Episode: Patient advocate @JenniferMAngus shares her #MS story and discusses her love for #ParaDressage. Thanks so much for appearing on the show, Jenny! Listen here: bit.ly/3QjRpIq
How can the #RareDisease community, as a whole, work to enhance and amplify diverse voices and diverse patient experiences?
Clinical Trial: Rinvoq 45 mg Brings ‘Rapid Resolution’ of Crohn’s Disease Symptoms bit.ly/3UvU5oR #Crohns #InflammatoryBowelDisease #CrohnsDisease @CrohnsColitisFn
'Kentucky Bourby' Fundraiser Aims to Support the Parkinson's Disease Community bit.ly/3Uk4GBQ #ParkinsonsDisease #Parkinsons
Rare Classroom: Russell-Silver Syndrome bit.ly/3xTot3K #RareClassroom #RussellSilverSyndrome #SilverRussellDwarfism #SilverRussellSyndrome
Investigational Treatment for ADPKD Earns FDA's Orphan Drug Designation bit.ly/3JxaBi6 #OrphanDrugDesignation #ODD #ADPKD #AutosomalDominantPolycysticKidneyDisease @KidneyFund
Is the CDC Botching its RSV Vaccine Rollout? bit.ly/3UwPtPn #CDC #RSV #RSVVaccines #RespiratorySyncytialVirus
Rare Community Profiles: How a Clinical Study Changed Dana’s Trajectory After Desmoid Tumor Recurrence bit.ly/4bf6cfH #RareCommunityProfiles #DesmoidTumor @DTRFoundation
Do You Live in Protection Mode Because of Your Pain? bit.ly/3w8Elij #Dystonia #ChronicPain #ChronicIllness @Dystoniabook1
Scientists have Discovered a Connection Between Metabolic Problems in the Brain and Neurological Disorders bit.ly/4aZfdti #RareDisease #NeurologicalDisorder #RareDisorder
Rare Community Profiles: How Kenzi is Navigating the Challenges of MCTD, FCAS, and Medical PTSD bit.ly/44jvUNS #RareCommunityProfiles #MCTD #FCAS #PTSD #MedicalPTSD #MixedConnectiveTissueDisease #FamilialColdAutoinflammatorySyndrome
First Patient Dosed in Study Evaluating AlloNK (AB-101) for Lupus Nephritis bit.ly/44bvVTV #Lupus #LupusNephritis #ClinicalTrial @LupusOrg
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 🦓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]NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRareSynGAP 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 🎙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.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.RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & familiesCambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iwAbby Turnwald (she/he.. @PedsGCAbby
927 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling healthTorie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my ownThe Notorious EEG (M... @TheNotoriousEEG
10K Followers 2K Following Epileptologist/Head of Neurosciences @cookchildrens, I 💜 #HailState, buffalo wings, art, music & foremost Becky & my daughters. Views are mine, not my employerA Chronic Voice @AChVoice
18K Followers 14K Following I aim to share #chronicillness & #chronicpain news & stories fr VARIOUS perspectives. #Lupus #Sjogrens #AntiphospholipidSyndrome #epilepsy #anxiety #depressionMike Graglia 🌻 @JMGraglia
7K Followers 3K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerican-Lorem Foundation @n_lorem
1K Followers 572 Following Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for lifeStephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ersDavid Fajgenbaum, MD @DavidFajgenbaum
11K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrFLJ Russell Lab @LJRussell_Lab
290 Followers 311 Following Senior Lecturer in Childhood Cancer and Haematology at @UniofNewcastle @NU_Cancer, UK Haemato-oncology, genomics, epigenomics, structural variantsLabiotech @LabiotechTr
809 Followers 5K Following Labiotech is an ISO 17025 accredited test laboratory located in Ankara Turkey, offering a variety of technological services for medical devices.January Payne @januarypayne
1K Followers 2K Following Health communicator. Health equity advocate. Former health/medical journalist @washingtonpost @usnews. Dog mom. 🐶🐩🐕 Opinions are my own.Ramiro Maldonado @RamMaldonado32
1K Followers 2K Following @Dukeeyecenter Retina specialist. Ophthalmic Geneticist. Clinician-Scientist. #ophthalmicgenetics #genetherapy #electrophysiology #translationalresearchiPrevalence - UK Dise.. @iprevalence
42 Followers 483 Following 🏠 Home of useful disease stats 🏥 Powered by NHS prevalence data 👨⚕️ Supporting health & care with accurate data 📊 Find the dashboard on our websiteKathleen Fox Polizzi @cornerworker
4K Followers 4K Following Political ☮️ Activist #CrohnsWarrior #BLM #Environmentalist #LGBTQIA #MedMJActivist #TranslivesMatter. I despise Trump ! Retired CMA. Former CCFA facilitatorMegK @drmugekeskin
22 Followers 354 Following Assoc. Professor, Endocrinology, Ankara Bilkent City Hospitaljohn @john28515900
153 Followers 2K FollowingElsie Megan @poemsandparents
18 Followers 224 Following My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.Ryan Hodgson @Ryanintheus
195K Followers 187K Following Let’s do life better! CEO of @rysing_tide ~ Coaching | Strategy | Operations • 🇦🇺 in 🇺🇸 • Alcohol-Free • Melanoma Survivor • Host: @ArmourSessions張基城 @changgin58
1 Followers 20 FollowingRachel Oliver @murphbn
289 Followers 572 Following immune deficiency autoimmune chronic illness long-covid since January 2022 NBA MLB NFL I stand with IsraelKatGood @KathyStagni
206 Followers 731 Following Wife, mother, advocate....supporter of the special needs of families dealing with organic acidemias....my daughter has Propionic Acidemia.hpadjl2wr4zzm @40scq4vdpy2h2
0 Followers 44 Following༄✿Sana Queen♛�.. @SanaQueen_PTI
1K Followers 1K FollowingStephanie Burgess @steph_rules
188 Followers 1K Following I have Behcets Disease, amongst other illnesses. I hate discrimination. I dream of travelling. I love my friends and family! SIMPLES!! xxAlessandra Akai Tsubo.. @SaekoRossi
149 Followers 988 Following Anime and manga lover ♥️ I have APS.. June Is APS Awarness month🎀 Spread awarness or ask to me about antiphosho.. What 🧬🎀🎀🩸Deesha Nayar @deesha_nayar
19 Followers 70 FollowingCanadian Rare Disease.. @CanadianRDN
226 Followers 592 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.Refa @Refan_06
0 Followers 27 FollowingJordan @JordanAMitchell
93 Followers 328 Following Father of @Life4Liam diagnosed with Niemann Pick Type-C. Fighting for a Cure. Donate at https://t.co/SnRHW69A0vALK Positive @ALKPositiveinc
2K Followers 909 Following We are a patient-driven organization, dedicated to improving the life expectancy & quality of life for ALK-positive cancer patients worldwide. #StrongerTogetherligen @Yiping_fu
72 Followers 588 FollowingAtopic Derm and Devel.. @AtopicDermWorld
51 Followers 803 Following Atopic Eczema and ASD, ADHD, LD, HSP Are Closely Linked. New Findings That Overturn The Latest Prevailing Theory.【Amazon Kindle E-book】Owoeye David @davoshalom
771 Followers 2K Following God Lover. Infection Prevention & Control Specialist. Sickle Cell Warrior & Advocate. Author. https://t.co/9z1lvAfJYh…EPNS @EPNSnews
3K Followers 3K Following European Paediatric Neurology Society (EPNS): a society for physicians, health professionals, scientists and students with an interest in Child Neurology.Amanda Potts @AmandaPotts
182 Followers 676 Following Neurology PA-C @middlesexCT dog mom, nature and hiking enthusiast, fitness+yoga, country+EDM, former dancer +artist living with persistent Cushing's DiseasePrague Immunodeficien.. @immuno_prague
87 Followers 108 Following Department of Immunology, Charles University and University Hospital in Motol, Prague, Czechia.Kirstie Lithgow @Kclithgow
190 Followers 406 Following Endocrinologist. Outdoor enthusiast. Mom (👧🏼+👶🏻+🐶). She/her/hers. Settler on Treaty 7 land. Tweets are my personal views.Katie Kurnit @katiekurnit
1K Followers 785 Following Gynecologic Oncologist at the University of Chicago. Tweets are my own views.Debbie @momx3deb
2K Followers 2K Following autism/mito mom. baseball mom. photojournalism mom (is that a thing?). cat mom. cautious optimist. avid reader. movie fan. caffeine seeker. volunteer.Prof Jason Kovacic @kovacic_jason
1K Followers 649 Following MBBS, PhD, FRACP, FACC, FSCAI, FAHA | Executive Director of @VictorChangInst | Professor of Medicine @IcahnMountSinaiAnnamaria Regina @AnnamariaRegin3
474 Followers 2K Following 👩🔬PhD student in Corrado Lab @CECAD @UniCologne interested in #mitochondria #immunology #CL #gut https://t.co/9eRV0yCP4U🦓Hylah🦓 🇺�.. @Hylah6
1K Followers 2K Following Truth seeker. Truth teller. Animal lover. Avid reader. Progressive diseases: Ehlers-Danlos Syndrome, Chronic Migraine, Trigeminal Neuralgia, Chronic PainOnceUponaNurse @SuperNurseRN
182 Followers 850 Following Oncology & Specialty Infusion Nurse. Now, I'm the patient. Spread kindness. Have courage. Be brave. Keep going. Bernese Mountain Dog & Husky Mama.Halima KHOLAIQ @halima39971
18 Followers 187 Following PhD student at Laboratory of Clinical Immunology Inflammation and Allergies FMPC Morocco. interested in viral infections, IFNs, AAbs, PID, MIS-C.ImmunoTea: Your Immun.. @immunotea
446 Followers 622 Following The show where we tell you all about the most exciting research going on in the world of immunology. Grab a cup of tea, sit down and relax and we’ll fill you inMichelle Clay, PhD @microbigal
2K Followers 3K Following Director of Genomics Operations @SeqCoast | Postdoc @vscooper @Pitt | PhD @thehoganlab @Dartmouth | mother of two bundles of chaos | she/her | opinions my ownArwen Gao @ArwenGao
167 Followers 217 Following Assistant Professor | Amsterdam UMC - Location AMC | Aging & Longevity | C. elegans | Lysosome | Metabolism | Genetics | Former postdoc @Auwerx_LabMikee @mikee52000
700 Followers 866 Following I am a Myalgic Encephalomeylitis diagnosed housebound/bedridden patient ♿️ Getting on with my life as best I canMichelle Sharp @mwsharp5
2K Followers 1K Following Assistant Professor & Co-Director of the Sarcoidosis Center @HopkinsPCCM. Striving to improve clinical outcomes & disparities in sarcoidosis. Tweets my own.Manchester Rare Condi.. @mft_iMRare
602 Followers 234 Following Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditionssaysarcoidosis @saysarcoidosis
192 Followers 506 Following #SaySarcoidosis is a campaign to raise awareness about sarcoidosis. *****Will you join us and #SaySarcoidosis?*****Conrado Fernández Ro.. @ConradoFernnde1
395 Followers 287 Following Chief Gastroenterology & Hepatology. Hospital Universitario Fundación Alcorcon. Editor of Revista Española de Enfermedades Digestivas (Spanish J. Gastroenterol)Bbye0610 @bbye0610
75 Followers 229 FollowingRich Armstrong @MamimusicRich
306 Followers 2K Following Human, Kind, Musician, Author, Amateur Comedian, Myeloma Coach. Praying for People plus this Planet! Challenged... but not broken... by Multiple-Myeloma.Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓Rare 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. #RareDiseaseDayBeacon 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]NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #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.Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!Ethan Perlstein @eperlste
17K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/accGlobal Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRareSynGAP 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 🎙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.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.RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & familiesCambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iwAbby Turnwald (she/he.. @PedsGCAbby
927 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling healthTorie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my ownThe Notorious EEG (M... @TheNotoriousEEG
10K Followers 2K Following Epileptologist/Head of Neurosciences @cookchildrens, I 💜 #HailState, buffalo wings, art, music & foremost Becky & my daughters. Views are mine, not my employerA Chronic Voice @AChVoice
18K Followers 14K Following I aim to share #chronicillness & #chronicpain news & stories fr VARIOUS perspectives. #Lupus #Sjogrens #AntiphospholipidSyndrome #epilepsy #anxiety #depressionMike Graglia 🌻 @JMGraglia
7K Followers 3K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerican-Lorem Foundation @n_lorem
1K Followers 572 Following Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for lifeDADA2 Foundation @dada2foundation
339 Followers 273 Following We're a nonprofit looking for innovative ways to accelerate research into the rare inflammatory disease DADA2.Bernhard Schermer @BernhardScherm1
719 Followers 1K Following Scientist, MD, trying to decipher molecular mechanisms of kidney diseases. Private, inactive account. 🐘 Mastodon: https://t.co/JR4YJkVI4SFoundation for the Na.. @FNIH_Org
5K Followers 2K Following The Foundation for the National Institutes of Health (FNIH) builds and nurtures scientific partnerships to make important health discoveries possible.Veristat, LLC @VeristatCRO
645 Followers 459 Following Veristat is the science-first full-service drug and biologic CRO and consultancy.Life 4 Liam & Friends @Life4Liam
24 Followers 80 Following Mission to support families who are impacted by NPC and help find a cure through connecting NPC families, spreading awareness, and supporting medical research.World Primary Immunod.. @WorldPIWeek
2K Followers 781 Following Global awareness campaign bringing together patients, families, health professionals to raise recognition & diagnosis of primary immunodeficiency. #WorldPIWeekSrikanth Bathini @dakidneydoc
3K Followers 4K Following Nephrologist by Profession. Humanist by Nature. AINU,Hyderabad, India🇮🇳| ISN So-Me Education|Visual Abstract Editor-ASN|Mentor- NSMC, Glomcon.Paula Saffie Awad @PaulaSaffieA
312 Followers 1K Following Passionate Chilean MD treating rare diseases /PhD candidate / GP2 trainee representative for LATAMNathalie Grandvaux @NGrandvaux
5K Followers 3K Following PhD, Prof @umontreal, Associate Scientific Director & Director Host/Virus lab @CRCHUM, Co-founder @CanSocVirol #lupuswarrior Opinion my own 🇨🇦 🇫🇷 🇩🇪social media ninja @mrfredbriones
3K Followers 3K Following Multidimensional creative,Marcom Ninja,healthy Filipino food advocate, teacher,filmmaker,Rare Disease Advocate...living with Kennedy's Disease. #kennedysdiseaseAli Pajouhi @thealidotnet
1K Followers 5K Following Medical student, Research enthusiast and Great fan of Molecular medicineLeducq Vascular Malfo.. @Leducq_ReVAMP
209 Followers 99 Following ReVAMP Vascular Malformations. Lead by @ArispeLab @MiikkaVikkula @cleaverlab @penningerlab @LabSeyfried, & Tournier-Lasserve Lab. Funded by @FondationLeducqRHU-COSY @rhucosy
53 Followers 93 Following 🧬 RHU-COSY (Cure Overgrowth SYndromes), a scientific consortium to transform the outcome and the medical care of patients with overgrowth syndroms, follow us!Kurtis Kim @krkurtiskim_kim
444 Followers 2K Following Founder, International Foundation of Abdominal Compression Syndromes |Vascular & Endovascular Surgeon | Less than talented composer | Tweets are my ownErin Smith, MPH @JustErinToday
100 Followers 77 Following Rare disease patient advocacy & engagement Lover of dogs + hiking + food Always in service of Graham's legacy (b.3/17/14-d.8/2/14) Views are my ownKelly Barry, MD, MS @KellyBarry_
727 Followers 743 Following MD @TuftsMedSchool | PGY-1 @newtonwellesley | Future @MedicalCollege dermatology resident | Former D1 athlete @BCwtennisAshley Del Dosso @DossoAshley
163 Followers 234 Following Ph.D. Candidate in the Quadrato lab at the University of Southern California; Department of Development, Stem Cell and Regenerative MedicineRen Cai(蔡韧) @RichardRenCai1
20 Followers 105 Following Resident and Assistant Professor of Department of Interventional Therapy, Multidisciplinary Team of Vascular Anomalies, Shanghai Ninth People’s Hospital.PIPgen @PIPgen_ITN
249 Followers 496 Following PIPgen is an ITN @MSCActions funded by the @EC_H2020 focused on understanding the PI3K/PTEN pathway on monogenic rare diseases and cancerBRS @BoneResearchSoc
3K Followers 460 Following Bone Research Society, the oldest national scientific society in Europe devoted to bone research. Founded in 1950.CSF Leak Association @csfleakinfo
2K Followers 1K Following UK-based charity promoting awareness of cerebrospinal fluid (CSF) leaks; No. SC046319. New main Twitter account @csfleakukTyrosinemia Babies @TyrosinemiaBaby
18 Followers 60 Following Patient organization dedicated to helping families with tyrosinemia babiesKiran Musunuru @kiranmusunuru
3K Followers 94 Following Cardiologist, geneticist, and gene editor. Author of #TheCRISPRGeneration and #GenomeEditingAPracticalGuideIIH UK @IIHUK
3K Followers 1K Following Funding research, providing information & support for people with Idiopathic Intracranial Hypertension & all who support them. 1143522 & SCO43294Natasha Rekhtman MD P.. @natasharekhtman
5K Followers 531 Following Thoracic pathologist and cytopathologist at Memorial Sloan Kettering Cancer CenterGO Girls @GOGirls2015
3K Followers 5K Following UK cancer charity raising awareness & supporting women with cancer: Ovarian, Cervical, Endometrial, Vulval, Vaginal cancers #gogirls #womenshealthmatters.Dr. Maria Fleseriu @MariaFleseriu
2K Followers 318 Following Professor, Medicine & Neurosurgery, Director Pituitary Center, OHSU @ohsunews, Board of Directors @TheEndoSociety, Past President @PituitarySoc. Tweets my ownCristina Ronchi @CryRonchi
2K Followers 2K Following @IMSR_UoB Associate Professor in Endocrine Oncology @qehbham @uhbtrust Consultant Endocrinologist Focus on adrenal tumours and steroid excess @EndoOncologyThe National Adrenal .. @NADF_Adrenal
590 Followers 20 Following The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.Jerome Bertherat @JeromeBertherat
1K Followers 612 Following Head of Endocrinology Dpt @HopitalCochin @Univ_Paris @CRMR_SURRENALES @FIRENDOFrance @InstitutCochin. President of @ESEndocrinology. TWEETS ARE MY OWN VIEW ONLYGary D Hammer, MDPhD @DrGaryHammer
2K Followers 156 Following dad, husband, climber, director UM Endocrine Oncology, founder Millendo, founder SlingTx, immediate past president Endocrine Society. Thoughts are own. he/himAllergy & Asthma Netw.. @AllergyAsthmaHQ
10K Followers 4K Following 🌟 Allergy & Asthma Network unites and advocates on behalf of 60 million Americans with #asthma 😷, #allergies 🤧 and related conditions. Learn more ⬇️🕯MS Scents Candle .. @mstrue2toya
1K Followers 2K Following 🐐♑️MS Warrior🧡 Lemtrada DX-2018🕯Small Biz Owner/Chandler/💋Product Junkie🤩 Plant momma 🌿coffee snob ☕️#curems🎗IG: @mstrue2toya @msscentscandlecoBarry Singer MD 🧠 @drbarrysinger
7K Followers 393 Following Director, MS Center for Innovations in Care. 🧠 doctor helping people live well with multiple sclerosis. Podcast host: https://t.co/POevAw4x7s Tweets ≠ medical adviceCathy Chester @CathyChes
10K Followers 9K Following Certified Health Advocate. Patient Leader for MS community. Lifetime Achievement Award, @socialhealthnet Living with #multiplesclerosis for 38 yrs #IBS Wife/MomPenelope Conway ☀�.. @PositiveWithMS
10K Followers 155 Following Bringing smiles, hope and encouragement to everyone living with multiple sclerosis. MS is not the end of our life. https://t.co/DubmEs755J…Aaron Boster MD @AaronBosterMD
13K Followers 122 Following MS Neurologist & Spasticity Doc. Founder of The Boster Center For Multiple Sclerosis, https://t.co/EoJjH5eoVz. He/Him. Tweets ≠ medical advice. 🏳️⚧️🏳️🌈Dr. Brandon Beaber @Brandon_Beaber
16K Followers 2K Following Neurologist and MS specialist. YouTube creator. Author of "Resilience in the Face of Multiple Sclerosis". Father of 2. Tweets my own & not medical advice.Lorraine Johnson, JD/.. @lymepolicywonk
2K Followers 696 Following CEO https://t.co/AezdGdCmPj MyLymeData. Sat on Exec Com of PCORnet & chaired patient council; Subject matter expert patient registries for NORC etc .Bay Area Lyme Foundat.. @BayAreaLyme
3K Followers 954 Following The Bay Area Lyme Foundation is dedicated to making Lyme disease easy to diagnose and simple to cure.David Skidmore @Lymeloonies
4K Followers 3K Following Husband, father, cartoonist, musician @ 12 years with Chronic Lyme disease - I so hate ticks, but denial more! Created a cartoon book about Lyme (link below)Lonnie R Marcum, PT, .. @LonnieRhea
4K Followers 1K Following Wife/Mother•Science Writer•PT•HC Admin•Disease Detective•Voracious Reader•Connoisseur of ☕️•Graduate CSUN•Olive Farmer•HHS 2019-2022 TBDWG Tick SubcommitteeLivLymeFoundation @liv_lyme
3K Followers 301 Following Started by Olivia when she was 12 to help kids who cannot afford Lyme drugs & to find a cure. Her apps TickTracker & LongHaulTracker & book “But She Looks Fine”Global Lyme Alliance @LymeAlliance
8K Followers 1K Following Nonprofit dedicated to curing Lyme and other tick-borne diseases through innovative research, awareness and empowering the patient voice. #FightLymeLymeDisease.org @Lymenews
16K Followers 581 Following The #Lyme disease community's leading source for news, insight and advocacy. Publisher of The Lyme Times, creator of MyLymeData. A 501(c)(3) organization.Bryan Thunstrom @BryThunstrom
238 Followers 776 Following Husband & Father, ABM Practitioner®, #LymeAdvocate, NWS SKYWARN® #WeatherSpotter, auto | tech | biz | Speaker & Teacher | Connector | https://t.co/NrncFkFLTdDr. Heather Mefford @hcmefford
3K Followers 948 Following Physician, scientist, mom, wife #genetics #epilepsy #pediatrics #raredisease @StJude @StJudeResearch formerly @UWMedicinejeremy barry @jeremybarry321
737 Followers 1K Following Neuroscientist and dishwasher. Interested in Epilepsy, cognition and development. Assistant professor at UVM Larner College of Medicine and NGP faculty member.IRB Barcelona @IRBBarcelona
21K Followers 3K Following International research centre devoted to offering biomedical solutions to cure #cancer and other diseases linked to #aging. @iCERCA center, member of @_BIST.@sikcell @PatientWorthy @SCProdigy @sicklecell101 @SCCConsortium @SickleCellHOU @SCDAAorg Thank you! It’s an honor to be able to lend my voice and experience within the #raredisease/#sicklecell space.
Are you ready to support the #RareDisease community? Consider applying for the #RAREis Global Advocate Grant! buff.ly/3W78glo
Are you ready to support the #RareDisease community? Consider applying for the #RAREis Global Advocate Grant!
@PatientWorthy My neurologist who has advocated like hell for me, my home infusion nurse, who has taken such good care of me for the last 4+ years & my pharmacist who is the backbone of my care team. I wouldn’t be here without them.
LCS Network !
Call out an advocacy group, organization, or person who has made a positive impact on your #RareDisease journey! ⬇️
Just 5 days until #WorldOrphanUSA! Get ready for industry-defining keynotes including, "Can you overcome complexity and deliver value for rare disease patients in the EU health ecosystem?", with @Sciensus_Group @weareMSUK @sentynl @Progeria Register: tinyurl.com/ytf27dud
The City of Peterborough Proclaims April 19th Global CDH Awareness Day. cdhi.org/the-city-of-pe… #CDH #CDHAwareness #CongenitalDiaphragmaticHernia #CDHAwarenessMonth #April19 #CDHCharity #PediatricSurgery #RareDisease #PatientAdvocacy #proclamation #CDHProclamation
🇺🇸 “Scientists, researchers, clinicians: please don't give up on us #raredisease patients because we need you. You are our voice and our light in our darkest moments, so thank you,” Marie #NMOSD patient & TSF Ambassador Thank you @UNM for the feature! asresearch.unm.edu/news-events/20…
A new study plans to compare differences in inflammatory biomarkers between males and females with sickle cell disease, particularly in terms of the pathophysiology of vaso-occlusive crises. Read more: brnw.ch/21wIRUU #RareDisease #ClinicalTrial
The research data our #RareAsOne grantees are helping create + the patient communities they are building could power AI in our fight against #RareDisease bit.ly/4aWPGk9
According to the CDC, Black women are 3X more likely to die from pregnancy-related causes than white women. One contributing factor of these disparities is underlying chronic conditions. Let’s normalize having conversations about #BlackMaternalHealth and #RareDisease.