Search results for #RareDisease
Molly's Ty beanie sloth arrived safely today. Great reading Molly! I love the name Trouble for a sloth, it's perfect! 🥰🦥 #PompeDisease #FindYourTribe #RareDisease
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Patients with primary biliary cholangitis are at a higher risk of fragility fractures, according to a study published in the @jmbr Plus. Read more: brnw.ch/21wJ9bI #RareDisease #MedNews
Support research by gardening this spring! SHOP: curegm1.fpfundraising.com #curegm1 #hope #community #raredisease #shopforgood #gardening
#WorldOrphanUSA: Emil Kakkis, MD, PhD, founder and CEO of @ultragenyx, discusses the use of #biomarkers to enable successful development of disease-modifying therapies for #RareDisease during a @OrphanConf session. #OrphanDrugUSA #RDAatWODC
Help out with our New England data mapping project: ow.ly/F6YU50R4Gcw #raredisease
#WorldOrphanUSA: Frank Rivera of Stronger than Sarcoidosis expresses his hopes for the future of #MentalHealth care in the #RareDisease space, emphasizing the importance of doctors taking initiative. @OrphanConf #RDAatWODC #OrphanDrugUSA
#WorldOrphanUSA: “Listen, believe, and validate what the people in front of you are telling you.” - Lara Bloom of @TheEDSociety on medical gaslighting during the #RareDisease #DiagnosticOdyssey #OrphanDrugUSA #RDAatWODC @OrphanConf
Gene therapy holds great promise for treating rare diseases. By targeting the genetic root of the condition, gene therapy can potentially offer a one-time, transformative treatment. It’s a beacon of hope for many rare disease patients. #GeneTherapy #RareDisease
$SRPT Wow - some familiar neurologists suggesting #GeneTherapy + #ExonSkipping combination therapy. #Elevidys #Duchenne #RareDisease youtube.com/watch?v=hAelc-…
#WorldOrphanUSA: The CoRDS) registry benefits patients and researchers by enabling data sharing, clinical trial recruitment, natural history studies, and community building around rare diseases. Read more: brnw.ch/21wJ96F #RareDisease #RDAatWODC @OrphanConf
This is our Sarcoidosis Brother Fallen Snowflake Nickolas Thomas and he is a Beautiful Face of Sarcoidosis.💜 #Sarcoidosis #raredisease #preciousmemories #patientadvocate #Sarcoidosisadvocate #beautifulfacesofsarcoidosis #Sarcoidosisawarenessmonth
Freeline today announced the presentation of new data from the company’s Gaucher and Parkinson’s disease programs at the #ASGCT 27th Annual Meeting. Learn more here: bit.ly/3Uw8wZY #biotech #gaucher #raredisease #parkinsons
Is your nonprofit or company joining us at NORD's 2024 #LivingRareForum in #LosAngeles this June? Register by Tuesday, April 30, to take advantage of early bird pricing for this #RareDisease patient and family event: livingrare.org Patients and caregivers RSVP for free.
Spero has been named one of Boston's Best Places to Work by @BosBizJournal! At Spero, we believe that our Sperobes are our most important & valued resource. We pride ourselves on working together to advance new #RareDisease and #InfectiousDiseases therapies. #BBJBPTW
This is our Sarcoidosis Brother Pastor Timothy Madden and he is a Beautiful Face of Sarcoidosis!💜 Pastor Madden shared that he was diagnosed in 2010. #Sarcoidosis #raredisease #patientadvocate #Sarcoidosisadvocate #beautifulfacesofsarcoidosis #Sarcoidosisawarenessmonth
This is our Sarcoidosis Sister Angela Denning and she is a Beautiful Face of Sarcoidosis!💜 #Sarcoidosis #raredisease #patientadvocate #Sarcoidosisadvocate #beautifulfacesofsarcoidosis #Sarcoidosisawarenessmonth
#CharcotMarieTooth disease - The most common #RareDisease you’ve never heard of. #CMT is an inherited disorder that causes damage to motor nerves transmitting signals from the brain to muscles in the limbs, affecting some 3 million people worldwide medschool.vanderbilt.edu/basic-sciences…
Dr. Caramelo @raredisease
122 Followers 0 Following
RareDisease @NadirHastalik
964 Followers 78 Following 28 Subat 2019 Dunya #NadirHastalik Gunu Nadir Hastalik Toplulugu #TurkeyRareDisease Amacimiz #NadirHastalik farkindaligi olusturmak. #RareDisease
Rare Disease Day @rarediseaseCH
168 Followers 2 Following Am Sonntag, den 28. Februar 2010 findet in Basel und Zürich der TAG DER SELTENEN KRANKHEITEN statt.
raredisease_cbi @raredisease_cbi
147 Followers 16 Following 5th Annual Rare Disease Leadership Summit -- July 13-14, 2010
Rare Disease India @raredisease_in
590 Followers 213 Following 70 million Indians suffer from #RareDiseases. #Genomics offers them a new #hope.
NCL_RareDisease @NCL_RareDisease
592 Followers 911 Following @UniofNewcastle Centre of Excellence for Rare Disease works with @NewcastleHosps @NHIPartners & more, to constitute a 'Newcastle RD' community(Tweets V.Hedley)
Special Needs Jungle @SpcialNdsJungle
40K Followers 10K Following #SEND news, views, resources. Parent-led SEND influencers #FixSEND #Health #Disability #mentalhealth #autism #RareDisease #adhd Led by @TaniaLT @RenataBplus3
Rare2Aware @Rare2Aware
4K Followers 351 Following #RareDisease awareness initiative by Takeda. For an audience outside the US and the UK. Contact us via DM. Community guidelines: https://t.co/HOHonTBQ9i
RareConnect @RareConnect
19K Followers 5K Following 🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Kevin E FitzGerald @IPFAdvocate
17K Followers 13K Following Pulmonary Fibrosis (IPF) Patient Advocate - Raising Awareness of #IPF #PulmonaryFibrosis #RareDisease #CureIPF #IPFAdvocate • Inspirational Speaker • Ambassador
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
Carrie Ostrea, MBA @RareDiseaseAdv
1K Followers 111 Following Little Miss Hannah's Mom #RareMom. Providing education & mentoring to #raredisease advocates. Comments and opinions are my own.
yoni יוני @Primary_Immune
41K Followers 27K Following Human being. Jew. Israeli. Primary Immunodeficiency patient. הודו ליה-וה כי טוב כי לעולם חס #Immunology #raredisease #ISRAEL
한국희귀질환재.. @raredisease_
263 Followers 348 Following 한국희귀질환재단은 뜻있는 시민과 지자체, 기업, 단체 등의 후원과 참여로 이루어지는 순수공익재단으로써 희귀질환 치료를 위한 사회적 여건 개선을 통해서 환자와 가족들의 삶의 질 향상에 힘쓰고 있습니다.
RareDisease_Mie @RareDisease_Mie
471 Followers 613 Following 一人でも多くの方々に「稀少難病」を知っていただきたいです。NPO法人三重難病連加盟団体 （三重県難病相談支援センター事業受託団体 前三難連理事 稀少難病の会みえ会長 RDDJAPAN MIE主催 桑名市民活動団体)
RareDisease_HU @RareDisease_HU
29 Followers 0 Following A community for people affected by rare diseases. Learn, share, and connect with peers and healthcare professionals.
ra🐾 @___raredisease
17 Followers 41 Following
Michele Rhee @michelerhee
2K Followers 317 Following #RareDisease & #AYACSM / #AYA Cancer #PatientAdvocate| Board of @CostsOfCare | Overall enthusiastic person! | Tweets are my own.
Tasha 💫 @feelinfroggy181
29K Followers 2K Following Mom to a real life superhero ❤ #raredisease #egids #mito #chd #masto #eds #pots PettyBettyCrocker 🥧 on hiatus $bradensmom14 💜 Raccoonteur🦝 NBA Addict🏀
Henna Tyynismaa @HTyynismaa
911 Followers 190 Following Professor / Vice Dean of Research, Faculty of Medicine @helsinkiuni #mitochondria #proteostasis #stemcells #motorneurons #raredisease
Rare Diseases India @rarediseasesind
4K Followers 259 Following A public awareness initiative by Sanofi (Specialty Care) India on #RareDisease issues. For India residents only. #EveryLifeIsPrecious https://t.co/YH80r3SUFk
Urddad-Foundation @RarediseaseNI
53 Followers 609 Following My name is Cavan Hoey I have two Rare Diseases called XLP,and HLH I live in Bodmim Cornwall I am raiseing awearness of Ultra Rare Diseases
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Sickle cell disease @Sicklecell_RM
801 Followers 357 Following Page no longer active. Follow @RaremarkHealth for #SickleCell Our vision is to shape a world where all rare conditions are understood and treated. #RareDisease
Liz Worthey @lizworthey
6K Followers 2K Following #AssociateProf #CompBio #Omics #WomenInScience #PrecisionMedicine #RareDisease #ME/CFS #hEDS #UndiagnosedDisease #SciFiNerd #Mama #Scottish #Texan
Elijah's Hope @ElijahsHopeCIC
1K Followers 941 Following Aiming to help people with #genetic condition, Apert syndrome and other #disability #raredisease Find our RareConnect community: https://t.co/OgRBk6051H
Barby Ingle Official @BarbyIngle
20K Followers 8K Following #AZ #PCRC D5, AZ State Rep Candidate #LD7 |#IAm #Writer #RareDisease #ChronicPain, #UniversalPetite, Creator of #NERVEmber
Ana @Ana4raredisease
18 Followers 64 Following Yes, I am a that mom who stalks her daughter on social media.
Boston Biotechs @BostonBioTechs
2K Followers 160 Following Simplifying #ClinicalResearch. #ClinicalStrategy and #CostEffective #TrialDesign specialists. #RareDisease and #OrphanIndication experts.
Yann Le Cam @yann_eurordis
1K Followers 263 Following CEO @eurordis, #raredisease #patient advocate. Member of @rarediseasesint council. Tweets are my own.
Victoria Warren @vwarrenmedia
8K Followers 2K Following News reporter turned healthcare storyteller. #RareDisease and #FoodAllergy advocate and coffee addict! @DanaFarber #7News alum. Tweets are my own.
The Mast Cell Disease.. @MCDiseasesUnite
2K Followers 340 Following Transforming lives of patients and families while finding a cure for #mastcelldisease since 1995. #Mastocytosis #MCAS #HereditaryAlphaTryptasemia #raredisease
Stanford CUD @stanford_CUD
425 Followers 139 Following Stanford Center for Undiagnosed Diseases. Hospital affiliate of the Undiagnosed Diseases Network @UDNconnect. #raredisease #science #genetics #genomics
Scott Pearl @scottpearlmktg
4K Followers 2K Following Executive Director | CEO. Top 50 Influential #CMO & #Marketing Leader. #Tech. #Nonprofit. #Healthcare. #Startup Mentor. #RareDisease Advocate. Tweets mine.
AdvocacyRSS 🇺🇲 @advocacyrss
5K Followers 4K Following Heather #RareDisease Advocate / Writer/ networking / president / Exec Producer #highstrungmovie / #WritingCommunity no DMs unless requested
The DECIPHER Project @deciphergenomic
2K Followers 107 Following Enabling #matchmaking and interpretation of phenotype-linked pathogenic genetic variation in patients with #raredisease by effective #datasharing.
Santhera @Santhera
791 Followers 233 Following #Santhera is passionate about improving the lives of patients suffering from a rare disease. #Duchenne #DMD #neuromuscular #theirfutureourfocus #raredisease
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
penyakitlangkaIND @RarediseaseIND
15 Followers 0 Following
Heather Corini (forme.. @hcorini
2K Followers 1K Following artist | attorney | #catlady | Disney AP | #ePatient #patientadvocate for #raredisease #dermatomyositis #SJIA #stillsdisease #juvenilearthritis #IVIG + she/her
Phelan-McDermid Syndr.. @Phelan_McDermid
1K Followers 583 Following Official site of the Phelan-McDermid Syndrome Foundation. We support families and fund research. #PMS #PMSF #raredisease #specialneeds #pmsfad
Youlianwang @YLW_raredisease
1 Followers 15 Following Youlianwang website is a mutual aid public welfare platform spontaneously created by rare disease patients and volunteers.
Ben's Friends @bensfriends
4K Followers 2K Following #BensFriends is a network of #patientcommunities for people with #raredisease and #chronicillness. 501c3 Nonprofit: https://t.co/X2Pip2rsIz
Dr. Heather Mefford @hcmefford
3K Followers 949 Following Physician, scientist, mom, wife #genetics #epilepsy #pediatrics #raredisease @StJude @StJudeResearch formerly @UWMedicine
ANAssociation @ANAssociation
1K Followers 576 Following The premier resource for the acoustic neuroma community. #acousticneuroma #raredisease #vestibularschwannoma #braintumor
Healx @healx
3K Followers 634 Following AI-powered and patient-inspired. We accelerate the discovery and development of #raredisease treatments.
Pheo Para Alliance @PheoPara
2K Followers 613 Following Investing in research and supporting #pheochromocytoma and #paraganglioma patients globally. "Stronger United" #NETCancer #RareDisease #pheo #para
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 🦓
I AM #RareDisease @EDSZEBRA686
154 Followers 526 Following I am a #chronicpainwarrior fighting #EDS #Dysautonomia #Gastroparesis & #Chiari #HealthcareIsAHumanRight and I #believe in #BernieSanders !
Balsam 🪷 @DrBalsamAhmad
6K Followers 4K Following Public Health | NHS | Art & Science | #SocialJustice| Mother #RareDisease | #Storyteller | RTs & likes NOT endorsements | views are my own
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Ataxia and Me CIO 118.. @Ataxia_and_Me
4K Followers 3K Following #Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
Mark2Cure @Mark2Cure
2K Followers 1K Following #Citizenscience effort to search #biomedical literature for clues on #raredisease. Join us!
Rare Advocacy Movemen.. @RareAdvocacy
3K Followers 1K Following Network of people with #RareDisease #LivedExperiences dedicated to evolving the #LivingRare experience into opportunities for the global community to thrive.
Crinetics Pharmaceuti.. @Crinetics
875 Followers 545 Following Discovering and developing novel therapeutics for #RareEndocrine disorders. #Crinetics #RareDisease #acromegaly #CarcinoidSyndrome
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Girl Gone Blind @Girl_Gone_Blind
3K Followers 2K Following Maria | #Speaker | #Blogger | #Advocate | Fitness Instructor #SanDiego | #Blind | I have Lebers Hereditary Optic Neuropathy #LHON | #RareDisease 👩🏻🦯
CureGRIN @CureGrin
773 Followers 350 Following CureGRIN is a parent-run foundation committed to improving the lives of people living with GRI disorder. #RareAsOne #GRIdisorder #raredisease
Jana Javornik @JanaSvenska
5K Followers 4K Following Academic/Policy Adviser | ex- Director-General of Higher Ed | Advocate #LongCovid #raredisease | Policy, Work/ers, EDI, Impact, Sustainability| Ops mine! |
Katie Helbig @katiehelbig
1K Followers 401 Following epilepsy, neurodevelopmental disorders, genetics 🧠 🧬 | #innovation for #RareDisease | champion of red wine and nacho connoisseur | opinions are mine
IamLongCovid @IamLongCovid
2K Followers 1K Following I am Long Covid! #IamLongCovid Spread the word! Bring attention to those suffering from #LongCovid, #ME #CFS #EDS #MCAS #MECFS #LongHaulers #RareDisease
Raredisease Consultin.. @RarediseaseC
1 Followers 0 Following Focused on Regulatory affairs for rare disease consulting and training for industries and professional, who are seeking new role in regulatory industry.
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
Float Like a Buttahfl.. @buttahflyk
1K Followers 1K Following Writer & Patient Advocate 🦋 arthritis | chronic illness | disability | invisible illness | rare disease | sarcoidosis Creator, Kaleidoscope RareDisease Stories
Sanath Ramesh @sanathkr_
2K Followers 1K Following Father of #RareDisease baby Raghav. Finding cure for GPX4 gene disorder 🧬 ; CEO @OpenTreatments_; Podcast https://t.co/hVuvGUSRtl Start. Pivot. Quit. Repeat
Chloe Reuter @ChloeReuterCGC
912 Followers 914 Following Genetic Counselor | @stanford_CUD @StanfordHCM @UDNConnect | #gcchat #CardioGen #raredisease #undiagnosed | @StanfordMed, @Cornell alum | she/her | views my own
TheLAMFoundation @LAMFoundation
1K Followers 468 Following Delivering facts about #LAM #RareDisease and The LAM Foundation. We're dedicated to funding research, advocacy and awareness to improve the QoL for all LAM pts.
Bertrand Might @bertrandmight
1K Followers 788 Following I'm a little guy. My parents blog about how I'm changing the world, one smile at a time. #NGLY1 #RareDisease #CDG @NGLY1org
FMDAdvocate @FMDAdvocate
1K Followers 833 Following I am a former research nurse & stroke survivor. Now spending my time as an advocate for #raredisease, #FMD , Fibromuscular Dysplasia
Rafael J. Yáñez-Mu�.. @RJYanezMunoz
502 Followers 304 Following @RoyalHolloway Professor; @_BSGCT President. #RareDisease #GeneTherapy #StemCells #GenomeEditing #ATMP #StudentWellbeing. He/him
MaskedMindfulTherapis.. @Sanfranpixie
1K Followers 1K Following Psychology, Math/ChE, meditation, Advaita Vedanta, human rights Breathe.. She/her #raredisease severe chronic neutropenia #immunocompromised #deathwithdignity
Sandy Smith @sandysmith317
3K Followers 2K Following #RareDisease #SYNGAP1 auntie. Working for a cure with @cureSyngap1. Healthcare IT professional. Micah 6:8 💜#epilepsy💙#autism💚#id
ECD Global Alliance @ECDGA
571 Followers 282 Following The ECD Global Alliance is the only nonprofit worldwide solely dedicated to people living with #ErdheimChester disease #histocytosis #histocyte #raredisease
𝕆𝕙 𝕟𝕠, �.. @WallaceUofE
749 Followers 400 Following Politicians/Officials? Love software & IA. FT carer & LOUD Activist 4 #RareDisease patients/carers. https://t.co/oF1E9HTZOD; https://t.co/T7B3Hgecf4. Veteran
Della Cogar @dc_raredisease
11 Followers 0 Following
Myositis Support and .. @MyositisSupport
2K Followers 2K Following MSU, patient-led, all-volunteer nonprofit empowering the #Myositis community. Patient support, education, financial assistance, research. #RareDisease
Lauren Perry @LaurenPerry80
2K Followers 2K Following #ColoradoNative☀️⛰️ | #RareDisease Advocate🦓 | #ISFJ✌️| #melomaniac 🎶 | #Xennial💾 | #SYNGAP1🧬 mom | Ops Mgr📃 at #SyngapResearchFund | @cureSYNGAP1💜💙💚
BLACKSWAN Foundation @raredisease_act
17 Followers 0 Following
Hope for Trisomy @HopeforTrisomy
682 Followers 459 Following Helping others make informed decisions by funding research, promoting education, raising awareness, changing lives. #Trisomy13 #Trisomy18 #Trisomy #raredisease
ISMRD-Join Our Fight @ISMRD
2K Followers 1K Following ISMRD is the leading advocate for families worldwide affected by a Glycoprotein & Related Storage Disease. #RareDisease https://t.co/LceSHQvRoT
Fondation Ipsen - Rar.. @FondationIpsen
551 Followers 393 Following Our mission is to improve #Raredisease diagnosis and patient's day-to-day lives. Discover our program, books, webinars, videos or podcasts.
Catherine Stratton, M.. @cathsmstratton
2K Followers 2K Following Epidemiology PhD(s) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafdn #KnowledgeTranslation #RareDisease #Pain #Disability
Rachelle Dixon @RachelleM_Dixon
1K Followers 1K Following President/Co-Founder of HSAN1E Society / Rare Disease Advocate / Speaker @hsan1esociety #raredisease #theother50percent
Nancy M. Anderson @nma08244
1K Followers 1K Following Passionate Advocate for #ChildhoodCancer & #RareDisease patients #CompassionateUse #ExpandedAccess #4Nathalie #MedGift 🎗Pass the 🎗#STARAct🎗& 💜#CuresNow💜
Dawn Veselka @DawnVeselka
1K Followers 1K Following Radiation Therapist. Health Advocate. Mom to #JAWarrior with #MCTD. Join our mission to send Happy Mail to 100k Warriors by Dec 2023! #chronic #raredisease
Jessica Lynn @JessTheWriter33
3K Followers 2K Following #RareDisease and Education Writer | VCU Ram | Traveler | Wino 🍷 | #LGM | Poet | Opinions are my own | Open to freelance opportunities: [email protected]
Alice Rathjen @dnatimes
6K Followers 4K Following CEO Founder DNAcompass GIS earth #maps reuse for #genomics #Raredisease #patientadvocacy #spatialgenomics https://t.co/Tzkyh8c3D3 [email protected]
JMG @JMG_BMJ
2K Followers 1K Following Journal of Medical Genetics - a leading international peer-reviewed journal ➡ Original research in human #Genetics #Research #Genomics #RareDisease #Cancer
CENA Project @CENAProject
2K Followers 2K Following CENA is a PCORI funded project led by Genetic Alliance working with 10 orgs to expand a health data network. #RareDisease #ChronicIllness #Genetic #Research
Lisa Weinberger, MAT @LisaWeinberger
741 Followers 484 Following Digital Marketing Professor | Content, SEO for a state university | Owned by @2_boxers_ivy_zo #pemphigus #raredisease #advocate https://t.co/BrNNLIIFhH…
GBS|CIDP Foundation @gbscidp
2K Followers 1K Following To support those affected by GBS|CIDP & variants so each patient obtains an early diagnosis, proper treatment &the opportunity for a full recovery #raredisease
SanfordCoRDS @SanfordCoRDS
4K Followers 2K Following CoRDS is the world's only cost-free, international #RareDisease #PatientRegistry - Enroll today and share your #data! https://t.co/DOIhiNxbbF
Sarita Edwards @SaritaEdwards
1K Followers 810 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Renata Blower FRSA - .. @RenataBplus3
2K Followers 2K Following National advisor for #SEND #ComplexCare & #RareDisease. 3 kids w/ disabilities. CoDirector @SpcialNdsJungle @YourUKParl winner @BMJ_latest reviewer #FosterCarer
Kimberly Amelia @fireflyrn84
1K Followers 2K Following RN/full time pt, advocate, #raredisease blog @PatientsLikeMe TOA Alumni @WEGOHealth Patient Leader/Expert #BreakthroughCrew Ambassador #SavvyPatient #pinksocks
Kate Learoyd @PKUFamily
1K Followers 1K Following Mum, lawyer, ask awkward questions, trying to cope with this icky platform: works for @NSPKU for better future for #RareDisease #pku, tweeting own views
AtaxiasARG @AtaxiasARG
882 Followers 701 Following 🇦🇷Ataxias Argentina #Ataxia #MovementDisorders #AtaxiaAwareness #Brain #Cerebro #Neurology #Neurologia #raredisease #livingwithataxia #Research 👩🔬👨🔬👨Trends for United States
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