Patient Worthy @PatientWorthy
We're a resource for engaging, informative content and rare patient news, well done. patientworthy.com Joined April 2015-
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Science Simplified: Differences Between a Gene Therapy Clinical Trial and a Cure bit.ly/3U4LfwX #ScienceSimplified #RareDisease #GeneTherapy @TESSResearch
Man with Pig Kidney Leaves Hospital, with All Signs Pointing to Success bit.ly/3xLJDkf #PigKidneyTransplant #KidneyTransplant #MedicalScience #MedicalResearch #RareDisease #ChronicKidneyDisease #KidneyFailure
Rare Classroom: Primary Immunodeficiency bit.ly/443fx7Y #RareClassroom #PrimaryImmunodeficiency #WorldPIWeek #PI
Researchers Discover 'Super Minigene' that Helps Find Potential Therapies for Spinal Muscular Atrophy bit.ly/4aX7CLA #SpinalMuscularAtrophy #SMA @CureSMA
Gene Therapy Led to “Robust Microdystrophin Expression” in Duchenne Muscular Dystrophy Patient bit.ly/3Q7WqDO #MuscularDystrophy #GeneTherapy #DuchenneMuscularDystrophy #DMD @MDAorg
First Treatment Approved for Nonalcoholic Steatohepatitis Liver Scarring bit.ly/447oBsA #NASH #NonalcoholicSteatohepatitis #MetabolicDysfunctionAssociatedSteatohepatitis #MASH @liverUSA
Are you ready to support the #RareDisease community? Consider applying for the #RAREis Global Advocate Grant!
Are you ready to support the #RareDisease community? Consider applying for the #RAREis Global Advocate Grant!
ADHD Drug Shortages Mean People Aren't Getting Their Meds bit.ly/4aYB5ER #ADHD #Ritalin #ADHDDrugShortage #ADHDMeds
Could We Treat Angelman Syndrome and Other Genetic Disorders in Utero? bit.ly/3JnZwzW #AngelmanSyndrome #RareDisease #GeneticDisorders @angelman
Rare Community Profiles: Revving for Hope: Raising HoFH Awareness in One Ride bit.ly/3xH42XL #RareCommunityProfiles #HoFH #FH #FamilialHypercholesterolemia #HomozygousFamilialHypercholesterolemia @TheFHFoundation
NORD and #RareDisease advocates were at the Mississippi State Capitol for the bill signing by Governor @tatereeves establishing a Rare Disease Advisory Council in #Mississippi! Rare disease patients and experts now have a guaranteed means of educating state health policymakers.
Today is #WorldHemophiliaDay. If you have #Hemophilia, what are some facts/thoughts that you want people to know? 🩸 #RareDisease
ATTR Amyloidosis: 1 in 4 Patients Experience Neurological and Cardiac Symptoms bit.ly/3xxSYMi #Amyloidosis #ATTRAmyloidosis #HereditaryATTRAmyloidosis @Amyloidosisfdn
Tune into the @PatientWorthy podcast! Hear FNIH's Drs. Julie Gerberding & Courtney Silverthorn discuss the new playbook to fast-track gene therapy approvals for rare diseases. Plus, insights from FNIH Ambassador Sharon King on its impact. …doyouspellthatraredisease.podbean.com/e/the-bespoke-…
Danicopan Approved as Add-On Therapy for PNH Treatment bit.ly/3xBsFoL #PNH #ParoxysmalNocturnalHemoglobinuria #RareDisease
Raising Vanishing White Matter Disease (VWM) Awareness: How Ella’s Pitch Catalyzed Change bit.ly/3UjQUAF #Leukodystrophy #VWM #RareDisease #VanishingWhiteMatterDisease
Study of the Week: Protein from Sweat is Protective Against Lyme Disease bit.ly/3vWTfYI #LymeDisease #TickBorneIllness #StudyOfTheWeek @Lymenews
New Podcast Episode: Guests from @FNIH_Org and @taylorstale discuss a new regulatory playbook designed to get certain therapies approved faster. Thank you so much for appearing on the show! ❤️ Listen here: bit.ly/3JfXr9f
One-Time Gene Therapy ABBV-RGX-314 Shows Potential in Wet AMD bit.ly/3PY1p9Z #WetAMD #MacularDegeneration #WetMacularDegeneration #WetAgeRelatedMacularDegeneration #AgeRelatedMacularDegeneration @MacularHope
Doctors Transplant Genetically Edited Pig Kidney Into 62-Year-Old Man with End-Stage Kidney Disease bit.ly/4awn5SY #Xenotransplant #ChronicKidneyDisease #CKD
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. #CareAboutRare
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 7K 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 431 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 & families
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Abby Turnwald (she/he.. @PedsGCAbby
919 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
Torie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
The 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 employer
A Chronic Voice @AChVoice
18K Followers 14K Following I aim to share #chronicillness & #chronicpain news & stories fr VARIOUS perspectives. #Lupus #Sjogrens #AntiphospholipidSyndrome #epilepsy #anxiety #depression
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
n-Lorem Foundation @n_lorem
1K Followers 572 Following Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
Stephanie 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 🏈@49ers
David Fajgenbaum, MD @DavidFajgenbaum
11K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
Stephanie 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!! xx
Alessandra Akai Tsubo.. @SaekoRossi
146 Followers 982 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 Following
Canadian Rare Disease.. @CanadianRDN
215 Followers 570 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 Following
Jordan @JordanAMitchell
141 Followers 328 Following Father of @Life4Liam diagnosed with Niemann Pick Type-C. Fighting for a Cure. Donate at https://t.co/SnRHW69A0v
ALK Positive @ALKPositiveinc
2K Followers 910 Following We are a patient-driven organization, dedicated to improving the life expectancy & quality of life for ALK-positive cancer patients worldwide. #StrongerTogether
ligen @Yiping_fu
97 Followers 546 Following
Atopic Derm and Devel.. @AtopicDermWorld
40 Followers 622 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
736 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
184 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 Disease
Prague Immunodeficien.. @immuno_prague
84 Followers 107 Following Department of Immunology, Charles University and University Hospital in Motol, Prague, Czechia.
Kirstie Lithgow @Kclithgow
189 Followers 405 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 644 Following MBBS, PhD, FRACP, FACC, FSCAI, FAHA | Executive Director of @VictorChangInst | Professor of Medicine @IcahnMountSinai
Annamaria Regina @AnnamariaRegin3
478 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 Pain
OnceUponaNurse @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
19 Followers 180 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
443 Followers 619 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 in
Michelle 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 own
Arwen Gao @ArwenGao
168 Followers 217 Following Assistant Professor | Amsterdam UMC - Location AMC | Aging & Longevity | C. elegans | Lysosome | Metabolism | Genetics | Former postdoc @Auwerx_Lab
Mikee @mikee52000
710 Followers 848 Following I am a Myalgic Encephalomeylitis diagnosed housebound/bedridden patient ♿️ Getting on with my life as best I can
Michelle 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
597 Followers 233 Following Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions
saysarcoidosis @saysarcoidosis
173 Followers 492 Following #SaySarcoidosis is a campaign to raise awareness about sarcoidosis. *****Will you join us and #SaySarcoidosis?*****
Conrado Fernández Ro.. @ConradoFernnde1
396 Followers 287 Following Chief Gastroenterology & Hepatology. Hospital Universitario Fundación Alcorcon. Editor of Revista Española de Enfermedades Digestivas (Spanish J. Gastroenterol)
Bbye0610 @bbye0610
77 Followers 230 Following
Rich Armstrong @MamimusicRich
326 Followers 2K Following Human, Kind, Musician, Author, Amateur Comedian, Myeloma Coach. Praying for People plus this Planet! Challenged... but not broken... by Multiple-Myeloma.
FOXP1 Intl @Foxp1I
127 Followers 96 Following We are a global group of parent volunteers working to empower families and individuals with FOXP1 syndrome to live full and enriched lives. A registered charity
LeBron Fans 👑 @LeBronJames
922K Followers 1.0M Following LeBron James news. #TeamLeBron #Strive4Greatness.🏆 @KingJames. 👑
Hilary @Hilary_Marie_37
427 Followers 2K Following physician. mom. wife. stage 4 RET+ NSCLC. Every day is a gift! Greedy for more :)
Clinical Care Options @CCO_Education
2K Followers 473 Following A leader in the development of innovative & interactive #CME/#CE educational programs for healthcare professionals | Clinically relevant, evidence-based.
john @JohnLPender
933 Followers 462 Following Stage IV Lung Cancer. Diagnosed 12/9/14. Chemo brain on top of untreated ADHD makes life interesting.
Young Lung Cancer Ini.. @YoungLungCancer
319 Followers 857 Following A division of a 501(c)(3) organization aimed at creating visibility, empowerment, and hope for young adults diagnosed with lung cancer before the age of 50.
Misty Dawn Shields @drshieldsmd
1K Followers 1K Following Translational Thoracic Oncologist, #MDPhD, @TheShieldsLab studying #SCLC, Asst Professor, Indiana University, HHMI Med Into Grad Scholar, IASLC ILCF Recipient
Brad Schnure @schnure
8K Followers 1K Following Dad. Husband. Current: Battling Stage IV ALK+ Lung Cancer #NSCLC. Former: Communications Director for @njsenategop
Richard Solomon @Richard94627816
7 Followers 25 Following
Cecilia Pompili MD Ph.. @pompili_cecilia
1K Followers 2K Following General Thoracic Surgeon, Associate Professor focusing on patient reported outcomes (PROMs) in lung cancer care @HullYorkMed @ests_womenThor
Go Lucky @TreeFanForever
302 Followers 4K Following
Cliff Knickerbocker, .. @Cliff_Trisomy15
42 Followers 222 Following Researcher studying the genotype/phenotype correlations, metabolic errors, screening protocols, and effective treatments for partial trisomies of chromosome 15.
Tim LaMonica @TimLaMonica
650 Followers 808 Following Retired Respiratory Therapist in a Neonatal & Pediatric ICU, Peds ER for 37 years.. Runner, Hiking, nature, Hockey fan. Have a son named David with Autism
b1h1nlkcne9loqh1 @3nk69ab18erpw
5 Followers 407 Following The team is a company that provides short-term investment income in cryptocurrency. With a rigorous plan, you can make $500 to $5,000. Click the link to join
Arafhart Kibirige @ArafhartK
32 Followers 249 Following
megweatherly @megweatherly
5 Followers 95 Following
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. #RareDiseaseDay
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.
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/acc
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 7K 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 431 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 & families
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Abby Turnwald (she/he.. @PedsGCAbby
919 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
Torie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
The 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 employer
A Chronic Voice @AChVoice
18K Followers 14K Following I aim to share #chronicillness & #chronicpain news & stories fr VARIOUS perspectives. #Lupus #Sjogrens #AntiphospholipidSyndrome #epilepsy #anxiety #depression
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
n-Lorem Foundation @n_lorem
1K Followers 572 Following Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
DADA2 Foundation @dada2foundation
337 Followers 273 Following We're a nonprofit looking for innovative ways to accelerate research into the rare inflammatory disease DADA2.
Bernhard Schermer @BernhardScherm1
726 Followers 1K Following Scientist, MD, trying to decipher molecular mechanisms of kidney diseases. Private, inactive account. 🐘 Mastodon: https://t.co/JR4YJkVI4S
Foundation 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
643 Followers 459 Following Veristat is the science-first full-service drug and biologic CRO and consultancy.
World Primary Immunod.. @WorldPIWeek
2K Followers 781 Following Global awareness campaign bringing together patients, families, health professionals to raise recognition & diagnosis of primary immunodeficiency. #WorldPIWeek
Srikanth 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
314 Followers 1K Following Passionate Chilean MD treating rare diseases /PhD candidate / GP2 trainee representative for LATAM
Nathalie 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. #kennedysdisease
Ali Pajouhi @thealidotnet
1K Followers 5K Following Medical student, Research enthusiast and Great fan of Molecular medicine
Leducq Vascular Malfo.. @Leducq_ReVAMP
209 Followers 99 Following ReVAMP Vascular Malformations. Lead by @ArispeLab @MiikkaVikkula @cleaverlab @penningerlab @LabSeyfried, & Tournier-Lasserve Lab. Funded by @FondationLeducq
RHU-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
446 Followers 2K Following Founder, International Foundation of Abdominal Compression Syndromes |Vascular & Endovascular Surgeon | Less than talented composer | Tweets are my own
Erin 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 own
Kelly Barry, MD, MS @KellyBarry_
729 Followers 745 Following MD @TuftsMedSchool | PGY-1 @newtonwellesley | Future @MedicalCollege dermatology resident | Former D1 athlete @BCwtennis
Ashley Del Dosso @DossoAshley
164 Followers 234 Following Ph.D. Candidate in the Quadrato lab at the University of Southern California; Department of Development, Stem Cell and Regenerative Medicine
Ren 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
251 Followers 488 Following PIPgen is an ITN @MSCActions funded by the @EC_H2020 focused on understanding the PI3K/PTEN pathway on monogenic rare diseases and cancer
BRS @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 @csfleakuk
Tyrosinemia Babies @TyrosinemiaBaby
18 Followers 60 Following Patient organization dedicated to helping families with tyrosinemia babies
Kiran Musunuru @kiranmusunuru
3K Followers 94 Following Cardiologist, geneticist, and gene editor. Author of #TheCRISPRGeneration and #GenomeEditingAPracticalGuide
IIH UK @IIHUK
3K Followers 1K Following Funding research, providing information & support for people with Idiopathic Intracranial Hypertension & all who support them. 1143522 & SCO43294
Natasha Rekhtman MD P.. @natasharekhtman
5K Followers 531 Following Thoracic pathologist and cytopathologist at Memorial Sloan Kettering Cancer Center
GO 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 316 Following Professor, Medicine & Neurosurgery, Director Pituitary Center, OHSU @ohsunews, Board of Directors @TheEndoSociety, Past President @PituitarySoc. Tweets my own
Cristina Ronchi @CryRonchi
2K Followers 2K Following @IMSR_UoB Associate Professor in Endocrine Oncology @qehbham @uhbtrust Consultant Endocrinologist Focus on adrenal tumours and steroid excess @EndoOncology
The National Adrenal .. @NADF_Adrenal
582 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 608 Following Head of Endocrinology Dpt @HopitalCochin @Univ_Paris @CRMR_SURRENALES @FIRENDOFrance @InstitutCochin. President of @ESEndocrinology. TWEETS ARE MY OWN VIEW ONLY
Gary D Hammer, MDPhD @DrGaryHammer
2K Followers 155 Following dad, husband, climber, director UM Endocrine Oncology, founder Millendo, founder SlingTx, immediate past president Endocrine Society. Thoughts are own. he/him
Allergy & 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 @msscentscandleco
Barry Singer MD 🧠 @drbarrysinger
7K Followers 394 Following Director, MS Center for Innovations in Care. 🧠 doctor helping people live well with multiple sclerosis. Podcast host: https://t.co/POevAw4x7s Tweets ≠ medical advice
Cathy 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/Mom
Penelope Conway ☀�.. @PositiveWithMS
10K Followers 156 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 695 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 Subcommittee
LivLymeFoundation @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. #FightLyme
LymeDisease.org @Lymenews
16K Followers 579 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
244 Followers 760 Following Husband & Father, ABM Practitioner®, #LymeAdvocate, NWS SKYWARN® #WeatherSpotter, auto | tech | biz | Speaker & Teacher | Connector | https://t.co/NrncFkFLTd
Dr. Heather Mefford @hcmefford
3K Followers 945 Following Physician, scientist, mom, wife #genetics #epilepsy #pediatrics #raredisease @StJude @StJudeResearch formerly @UWMedicine
jeremy 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.Tomorrow is treatment day for Suzy. We’re so very blessed to have @n_lorem and @BainBrainLab working to give Susannah and others independence we never thought was possible. Thanks to the passionate people @GoTeamIMPACT, Suzy is part of the @CULionsWSOC team. Her teammates are her…
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.
1 in 10 Americans are affected by a #RareDisease and @DavidsonFB and @UpliftingAth are teaming up to bring hope and inspiration to the #RareDisease community. Pledge your support as we host our Lift for Life on April 26: charity.pledgeit.org/f/kFVdDBkEDy
$SRPT WVU Medicine Children’s @WVUKids offers first dose of #GeneTherapy for #Duchenne muscular dystrophy in state #RareDisease #Elevidys 💪wvumedicine.org/news-feed/news…
Morquio syndrome is a rare genetic metabolic disorder that affects as few as 1 in 300,000 children. A young Okotoks, Alta., family is preparing for the first of their two children to begin a #stemcell transplant they hope will prolong her life. #RareDisease #Canada4Rare
Okotoks, Alta., family faces limited options as two young children battle rare genetic disorder. Reported by @CTVBMacfarlane @CTVCalgary #Canada4Rare calgary.ctvnews.ca/okotoks-alta-f…
There appears to be a low adherence to treatment among patients with myasthenia gravis, highlighting the need for mental health interventions and provision of social support in this population, as per a study in @ojrarediseases Read more: brnw.ch/21wISck #RareDisease
In “Living with Neurosarcoidosis,” Brad shares a lifetime of illness and how he has changed his perspective to enjoy his life with #neurosarcoidosis. Read his story -- and 59 others -- in Kaleidoscope #RareDisease Stories, now available on Amazon
Roger A. Levy, MD, Senior Global Medical Director, GSK Specialty Medicine, discusses Lupus nephritis, a rare kidney disorder #CheckRare #RareDisease #LupusNephritis checkrare.com/lupus-nephriti…
Applications for the 2024 #RAREis Global Advocate Grant are officially open through May 31. 75 global patient advocacy groups will be eligible to receive a $5,000 grant to help advance the needs of the #raredisease community. 🔗 amgen.ly/3U1yx27
It's an honor to call @DavidFajgenbaum a friend of the Foundation. He brings attention to an important issue for consideration in rare diseases. Repurposing! #RareDisease
Deadly hyperinflammatory disease finds curative treatment from a repurposed drug! DADA2, a rare hyperinflammatory condition, tragically forces children to endure strokes at a young age, often leading to premature death in their teenage years. Without a single clinical trial,…
NORD and #RareDisease advocates were at the Mississippi State Capitol for the bill signing by Governor @tatereeves establishing a Rare Disease Advisory Council in #Mississippi! Rare disease patients and experts now have a guaranteed means of educating state health policymakers.
Today for #NationalVolunteerMonth we're featuring Sarah, volunteer editor of the NORD #RareDisease Report on recessive #titinopathy and founder of NORD Member organization, #TeamTitin! It all started when Sarah became a rare parent. Read more: bit.ly/3vR7crj
Philly science friends! I’ll be giving a research in progress talk about my work (twice for different groups) on 4/25 and 4/30 from 12-1pm. Message me if you’re interested in attending and I’ll share the deets! #PhD #raredisease #marfan
Save the date May 10, 2024 for A Virtual Seminar (Live Stream on Facebook) with these nine moyamoya experts presenting the latest data as well as advancements in research. 0May2024VirtualSeminar.eventbrite.com #MoyamoyaFoundation #MoyamoyaAdvocacy #MoyamoyaResearch #RareDisease #VirtualSeminar
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