Cure MSD @CureMsd
Our mission is to cure Multiple Sulfatase Deficiency #TogetherWeCan #CureMSD curemsd.org Joined August 2017-
Tweets2K
-
Followers308
-
Following360
-
Likes351
Happy Rosh Hashanah to all who celebrate! From all of us at United MSD Foundation, we wish you a sweet New Year.
🔥Fire up your grilling game! 👉 Bid at the QR code to win this @BigGreenEgg XL package! Includes ConvEGGtor®, nest/handler + everything you need to barbecue, smoke, roast & bake like a pro. Thanks to Brothers ACE Hardware for donating charcoal & natural starter accessories!
🏈 Don’t fumble football fans! 🔥 Bid on our #SilentAuction & win for #MSD Families! 1️⃣ #Egg Bowl tickets (11/28, MSU vs Ole Miss) 2️⃣ Drew Brees print by Blue Dog artist George Rodrigue ⏳ Bidding ends 9/30 - bid here 👉 ow.ly/eknw50WZJNK #DrewBrees #GeorgeRodrigue #WhoDat
#OnlineAuction Highlight #4 ✨ Are you ready for a new chapter? This career coaching package with Patrice Perillo, founder of Find Your Spark, is sure to light you up! Visit secure.qgiv.com/event/umsdfvir… to bid on this & much more! Every bid helps children & families battling #MSD!
Today, we're wishing Mikhail a very happy 9th birthday! Mikhail, we at UMSDF hope you have an amazing day filled with family, friends, & all your favorites! Join us in the comments to wish Mikhail a happy birthday on his special day! #EveryBirthdayIsSpecial #HappyBirthday #MSD
Fund a meal & fuel hope with our #VirtualAuction! Now thru Sept. 30, directly support #MSD families traveling for AAV9 trials. #Bid & #give: ow.ly/PJEc50WX9tY 🥪 $25=Feed a child 🍽️ $75=Feed a caregiver 🥘 $525=Give a week of meals 💙 $1,575=Feed a family/week #FundaNeed
🏖️ Escape to Florida’s Emerald Coast! Bid on a 3-night stay in a 5BR private home in Santa Rosa Beach! Relax on white sand beaches, soak up #coastlife, make unforgettable memories! Bid here👉 ow.ly/vWAk50WXzSI & support #MSDfamilies at our #SilentAuction now thru Sept. 30!
Our #VirtualAuction is packed with awesome adventures to bid on - like this Weekend #Getaway to New Orleans! Will yours be the highest bid? Find out here👉 ow.ly/vktW50WXch4 Support #MSD families with every bid now thru Sept. 30! #Fundraiser #BenefitAuction #NOLA
Fuel hope with our Virtual #Auction #Fundraiser! Sept. 15-30, bid on getaways, art, jewelry, football tix & more — all to support #MSD families. Help Fund-a-Need & provide meals for families traveling to clinical trials. Your bid makes a difference here: ow.ly/l9F950WWc6U
Get ready to crack open the fun! Our ONLINE #SilentAuction starts TOMORROW, Sept 15-30! Score getaways & packages, including a Big Green Egg XL Grill, tix to the Egg Bowl, & more-all to support #MSD families! Start bidding at ow.ly/gqmj50WWbt3 #VirtualFUNdraiser #RareAware
Today we remember Jaylen Garrett, who passed away 10 years ago at age 8. The joy, laughter, & love she brought into this world continue to shine in the hearts of everyone who knew her. Jaylen, you are forever missed, forever loved, & never forgotten. #MSDAngel #NeverForgotten
Today we remember Vadelma Sade Saarni, who passed from MSD 4 years ago at just 10 months old. The love & joy she gave will forever be cherished. She is deeply missed, & we hold her family in our hearts as we honor her memory. #NeverForgotten #MSDAngel
Big news! UMSDF is honored to be a '24 #RAREis Global Advocate Grant recipient from @Amgen. Thanks to this support, our new Family Portal launches 9/12 to connect families, build community & expand MSD education & advocacy! Learn more at bit.ly/3Z6sfSP. #RareDisease #MSD
Happy 15th Birthday, Grace! You are a true warrior for MSD. We are very proud of you. With much love from all of us at the United MSD Foundation, we hope you have the most amazing day! #HappyBirthday #MSDWarrior #MultipleSulfataseDeficiency #Birthday #MSD
Happy 14th Birthday, Riley! 💙 From all of us at the United MSD Foundation, we hope you have an awesome, fun-filled day with your friends, family, and horses! Please wish Riley a very happy birthday in the comments! #TogetherWeCan #EveryBirthdayIsSpecial #RareAware #MSD
Today is Analynn's 14th birthday! 💙 We hope you have the most wonderful day filled with all your faves, Analynn. With much love from all of us at United MSD Foundation! Please be sure to wish Analynn a very happy birthday in the comments! #HappyBirthday #TogetherWeCan #MSD
AAV9 gene therapy is moving forward with vector manufacturing underway & protocol review complete. We're grateful for our committed partners at BGTC working urgently to bring this critical #MSD treatment to trial. Learn more about our progress here: ow.ly/zCot50WGaQJ
August's E-News is out! Are you signed up for the latest updates on our AAV9 gene therapy trials, Silent Auction, & all the ways YOU can join the fight to find a treatment for MSD? Don’t miss a beat—sign up here: curemsd.org/newsletter-sig…
It’s that time already! 🦓 The 9th annual Zebra Run returns March 2026 — & we need amazing volunteers to help make it happen! Live on the MS Gulf Coast? Join the planning committee: [email protected]. #ZebraRun #Volunteer #RareAware #Fundraiser
So much BLUE thanks to YOU! 💙 A Blue Wave of Hope lit up landmarks across the globe for #MSDWorldDay — shining bright for families facing Multiple Sulfatase Deficiency. Each light was a beacon of awareness & hope. Thank you. 💡🌍 #BlueWavesofHope #BlueForMSD #RareAware #MSD
Ethan Perlstein bio/a... @eperlste
19K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, ceo @endrarediseases $CURES, evo pharmacologist, mTOR worshipper $RAPTOR, cofounder of K&L
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.
FCDGC @FrontierCDG
458 Followers 779 Following #NIH consortium fostering collaborative research among researchers, patients and clinicians, for congenital disorders of glycosylation (#CDG). RT/Like≠endorse
Alan Finglas @AlanFinglas1
261 Followers 583 Following Founder/Research Manager of MSD Action Foundation, my son is affected by Multiple Sulfatase Deficiency, a clinically devastating Lysosomal Storage Disorder.
@Megannazari 2006 @adedokun_l93321
36 Followers 165 Following Thank you to all the donors and supporters who contribute to my campaign .Your generosity and donations have made a significant impact
cillianbou36694 @cillianbou31565
0 Followers 91 Following
Adeline Johnson @AdelineJoh41264
1 Followers 98 Following
Hana wilson @majed90majed100
301 Followers 1K Following Reflecting on my journey and where I want to go next.
Angela Georginis @AGeorginis
0 Followers 10 Following
Barbara Sprague @spr74795
92 Followers 455 Following
Lucio Flavio Santos P... @LucioPinheir0
86 Followers 694 Following
Abigail Williams @AbigailWil53029
7 Followers 150 Following
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.
Felicity Nesham-West @FelicityWest_
0 Followers 12 Following
Catherine Whittinghil... @cwillingworth
389 Followers 299 Following Advocacy for CMT4C | "Sharpen here, reader, your eyes to the truth, for the veil is now surely so fine that passing within is easy." Purg. 8.19-21
Undiagnosed? @RareDiseaseDDx
2K Followers 4K Following Select symptoms in free RareLook™ to see matching rare diseases. Share with physician, who gets free RareMDx™ to refine and generate a DDx.
UCDavis_Gene_Therapy @UCDavisGT
2K Followers 2K Following Gene Therapy Center at UC Davis Health in Sacramento. We currently have 59 clinical trials of gene and/or cell therapy at UCD & a GMP Facility. Keeping busy! 😊
Phyllis @fortier14phylli
246 Followers 3K Following
UCSF Center for Mater... @UCSFcmfpm
593 Followers 433 Following We discover genes that drive fetal anomalies & develop fetal molecular therapies to treat serious genetic diseases before birth. @ https://t.co/BPzi7qVXLi
Fatihin Fedaisi @Fa57516Fedaisi
247 Followers 6K Following
EllenMatloff @EllenMatloff
2K Followers 3K Following Certified #GeneticCounselor and President & #CEO of @MyGeneCounsel. Contributor @Forbes. #digitalhealth #femalefounders #genechat #genetics #precision medicine
Stem Cell Tracker @StemCellTracker
20K Followers 12K Following Independently tracking stem cell research, genetics, and longevity for over a decade. Share ≠ Endorsement.
Nobendu Mukerjee @Nobendu00
58 Followers 906 Following Cancer biology, Extracellular Vessicles, Targeted destruction
Coosouski @CoosouskiSm8VP
24 Followers 2K Following
CathernEgley @CathernEgl11839
40 Followers 2K Following
Ruth @ruth_roberson_
315 Followers 3K Following
ML @71mal
88 Followers 510 Following
Rebecca Gibson, MD, P... @RGibson2164
263 Followers 643 Following (she/her) pediatrician & physician scientist @UNCpedsres 👶🧬 I MD/PhD @DukeMSTP 👩🏻⚕️ I Undergraduate @ColumbiaUniversity 🦁🎓
William Alexander @WillJAlexander
31 Followers 94 Following My name is Will. I’m a writer and editor who specializes in science and medical journalism. I live in Chapel Hill, North Carolina
BREN-DEE @BrendaColeman20
7K Followers 7K Following Welcome to my group FACE FORWARD to celebrate the strength, beauty, and brilliance of girls with facial differences.
SusannaSumma @SummaSusanna
74 Followers 146 Following Bioengineer at the Movement Analysis and Robotics Laboratory MARLAB
Rod's Racers, LLC @RodsRacers
2K Followers 3K Following Jackson, MS. Your source for #roadraces in the state of MS since 2010. Follow us on FB, X & IG. Web: https://t.co/OYJUbDkmR4
Lavon @lavonmittler19
279 Followers 3K Following
is believing ... @isbelieving
694 Followers 2K Following Chronic Inflammatory Demyelinating Polyneuropathy Multifocal Motor Neuropathy Guillain-Barre Syndrome #MMN #GBS #CIDP #peripheralneuropathy #Autoimmune #MS
Kristophe Diaz, PhD @KristopheDiaz
3K Followers 3K Following I lead @CurePSP as its ED & CSO #neurodegeneration #partnerships - #neurotwitter https://t.co/okt78bSLm8
RARE Ireland @rareireland
1K Followers 2K Following We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
Stevo @91stevo
34 Followers 288 Following
Accessia Health @AccessiaHealth
2K Followers 2K Following Accessia Health is a leader in nonprofit #patientassistance for people with rare and chronic health conditions. We speak health and human.
Sierra Phillips @RVAPhillipsFam
30 Followers 160 Following Twin Mom, Rare Mom, Disability Mom, Genetics Enthusiast, and relentless Momvocate #WarsawBreakageSyndrome #RareComend
Canadian Business Gro... @CBGFinvestments
15K Followers 12K Following We provide Canadian mid-market businesses with long-term, patient, minority investments between $5- $20 million. #CBGFthinkBIG #CdnBiz #entrepreneurship
Electricity Human Res... @electricityHR
12K Followers 8K Following The most trusted source of HR insight, programs & tools for the Canadian electricity industry. ⚡️ We're not posting here anymore. Follow us on LinkedIn below.
cillianboushel @cillianbou36694
236 Followers 1K Following
Katherine @conde26katherin
340 Followers 3K Following
95, Rare Alliance Gre... @95Rare
418 Followers 402 Following 95, Rare Alliance Greece is a Greek non-profit Organization advocating for all who live with a rare & an undiagnosed #RareDisease 🔺 #ΣπάνιεςΠαθήσεις #Υγεία
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Ethan Perlstein bio/a... @eperlste
19K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, ceo @endrarediseases $CURES, evo pharmacologist, mTOR worshipper $RAPTOR, cofounder of K&L
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 🦓
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
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.
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
The Journal of Inheri... @JIMD_Editors
4K Followers 826 Following At a recent Council meeting a decision was made that the SSIEM will no longer interact with X. Please find us on any other Social Media channel.
Genetic Counselors @GeneticCouns
15K Followers 593 Following National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
Alan Finglas @AlanFinglas1
261 Followers 583 Following Founder/Research Manager of MSD Action Foundation, my son is affected by Multiple Sulfatase Deficiency, a clinically devastating Lysosomal Storage Disorder.
National Human Genome... @genome_gov
80K Followers 385 Following Funding research at the forefront of genomics to improve human health. Formerly the Human Genome Project. https://t.co/4hdQRFkFNU
Peace Bridge @PeaceBridgeAuth
2K Followers 774 Following The Buffalo and Fort Erie Public Bridge Authority (PBA). Current border travel times here: https://t.co/F9asWGMmhL
Tatiana Bremova @TatianaBremova
7 Followers 96 Following I am a Mother, a Wife, an MD and a Neuroscientist. I believe in action. I believe in ambitions. I believe in our future, IF WE ACT. Think globally, act locally.
Teamit @TeamItResearch
211 Followers 321 Following We are a research management organisation that builds strong public-private partnerships and provides transversal expertise for impactful health science.
Share4Rare @Share4Rare
2K Followers 960 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
REPO4EU @REPO4EU
352 Followers 576 Following The #HorizonEU initiative building a global platform for #DrugRepurposing powered by #AI | Collaboration & knowledge transfer for #NetworkMedicine 💊
Wang-LysoLab @WangLysolab
64 Followers 81 Following Twitter Account for Ray Wang’s Translational Lysosomal Research Lab. Habitually too many projects, not enough publications. All thoughts and opinions are my own
UCSF Center for Mater... @UCSFcmfpm
593 Followers 433 Following We discover genes that drive fetal anomalies & develop fetal molecular therapies to treat serious genetic diseases before birth. @ https://t.co/BPzi7qVXLi
FDA Law Blog @fdalawblog
5K Followers 124 Following Food and Drug Attorneys at Hyman, Phelps & McNamara, P.C.
Sanfilippo CFoundtn @SFCFoundtn
992 Followers 567 Following Dedicated to driving research, enabling access to effective treatments and improving the quality of life for children affected by Sanfilippo syndrome.
CDC @CDCgov
5.5M Followers 246 Following CDC's official source for daily credible health & safety updates from Centers for Disease Control & Prevention. Privacy/comment policy: https://t.co/9LbZmE3Wzg
Manning Family Childr... @manfamchildrens
12K Followers 875 Following Children’s Hospital New Orleans is celebrating a new chapter and name as Manning Family Children's. Learn more at https://t.co/Qs6zypCVu6.
STLChildrensHospital @STLChildrens
17K Followers 5K Following St. Louis Children's Hospital is one of U.S. News & World Reports top ranked pediatric hospitals and serves patients from around the world
Texas Children's @TexasChildrens
36K Followers 812 Following Official X of Texas Children’s Hospital. Our mission is to create a healthier future for children & women by leading in patient care, education & research
ClinGen @ClinGenResource
10K Followers 125 Following Sharing Data. Building Knowledge. Improving Care. NIH-funded resource established in 2013.
Genetics in Medicine @GIMJournal
16K Followers 3K Following Genetics in Medicine, an official journal of @TheACMG Site use policy: https://t.co/gMGoSv2TJY. Cover image by https://t.co/CqIOOiJw29 user fanjianhua.
Johns Hopkins All Chi... @allchildrens
14K Followers 399 Following Johns Hopkins All Children's Hospital provides expert pediatric care for children and families from across the state of Florida and beyond.
HHS.gov @HHSGov
1.6M Followers 29 Following Official account of U.S. Department of Health & Human Services | Follow @SecKennedy | Privacy policy: https://t.co/2fvEGkrCJN.
Ambry Genetics @AmbryGenetics
8K Followers 2K Following As a company built by scientists, genetic counselors and physicians, Ambry, a Tempus company, is your partner in #genetics and #genomics.
Molecular Therapy @MolTherapy
4K Followers 344 Following The leading family of journals in gene & cell therapy. Journals include Molecular Therapy, Methods & Clinical Developments, Nucleic Acids, and Oncology.
Chan Zuckerberg Initi... @ChanZuckerberg
27K Followers 451 Following We are working at the intersection of AI and biology to advance science, build powerful technologies and transform health.
Stem Cell Tracker @StemCellTracker
20K Followers 12K Following Independently tracking stem cell research, genetics, and longevity for over a decade. Share ≠ Endorsement.
Cell Therapy News @celltherapynews
12K Followers 612 Following An online resource for the latest cell therapy, gene therapy and regenerative medicine news. Part of the @STEMCELLTech Science News service.
California Institute ... @CIRMnews
15K Followers 526 Following Accelerating world class science to deliver transformative regenerative medicine treatments in an equitable manner to a diverse California and world
Alliance for Regenera... @alliancerm
7K Followers 2K Following ARM champions the benefits of engineered cell therapies and genetic medicines for patients, healthcare systems, and society.
STEM CELLS Journal @StemCellsJournl
8K Followers 4K Following STEM CELLS, a peer reviewed journal published monthly, provides a forum for prompt publication of original investigative papers and concise reviews.
MedicsforRareDisease @MedicsForRare
5K Followers 2K Following This account is no longer active, please continue to follow our work on Instagram and Bluesky! @medicsforrare
stanfordgcprogram @sugcprogram
293 Followers 143 Following Official account of Stanford's Genetic Counseling Graduate Program.
RareDiseasesGreece @RareDiseasesGr
138 Followers 171 Following "#RareDiseases Greece" is the Greek RD Federation dedicated to improving the quality of life of all those affected by rare disorders | #ΣπάνιεςΠαθήσεις #Υγεία
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
EllenMatloff @EllenMatloff
2K Followers 3K Following Certified #GeneticCounselor and President & #CEO of @MyGeneCounsel. Contributor @Forbes. #digitalhealth #femalefounders #genechat #genetics #precision medicine
Elina Miaouli @ElinaMiaouli
5K Followers 2K Following 🎗️#RareDiseases + #Cancer Patient Advocate 🌐 Founder of @SpaniosGr | COMMO at @RareDiseasesGr | #ΣπάνιεςΠαθήσεις #Καρκίνος #Υγεία #ΑμεΑ | ☘️
Rare Patient Voice @rarepatientvoic
2K Followers 3K Following We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Duke Children's @Duke_Childrens
7K Followers 731 Following Dedicated to the advancement of pediatric healthcare by providing compassionate care to children of all ages. http://t.co/eVimtcEj
Fundación Lautaro Te... @LautaroNecesita
221 Followers 88 Following La Fundación Lautaro te Necesita tiene como misión contribuir a mejorar la calidad de vida de todas aquellas personas afectadas por LEUCODISTROFIAS
BetterHelp @betterhelp
13K Followers 259 Following Therapy, made accessible. Click the link to get started ↓
ColumbiaGCProgram @ColumbiaGCP
701 Followers 840 Following Official account of Columbia’s Genetic Counseling Graduate Program. We promote genetics & genomics for social justice and healthcare. #alwayslearning #HR3235
CCRM @CCRM_ca
7K Followers 2K Following CCRM supports the development & commercialization of regenerative medicines & associated enabling technologies, with a specific focus on cell & gene therapy.
95, Rare Alliance Gre... @95Rare
418 Followers 402 Following 95, Rare Alliance Greece is a Greek non-profit Organization advocating for all who live with a rare & an undiagnosed #RareDisease 🔺 #ΣπάνιεςΠαθήσεις #Υγεία
UCDavis_Gene_Therapy @UCDavisGT
2K Followers 2K Following Gene Therapy Center at UC Davis Health in Sacramento. We currently have 59 clinical trials of gene and/or cell therapy at UCD & a GMP Facility. Keeping busy! 😊
DrPasEle @DrPas84Ele
2K Followers 5K Following Communication | Advocacy | Policy | #Neuroscience #PhD | Founder n President of #RareSpecialPowers | #rarediseases | #pinksocks | Own views
Khrystal K. Davis, JD @KhrystalKDavis
19K Followers 18K Following Founder @txrare Dedicated to Improving Access for the Rare Disease Community. Hunter’s (SMA Type 1) Zebra Mom 🦓. Patient Advocate. Speaker. Author. 👦 🧬🦓
American Association ... @AAPSComms
5K Followers 1K Following AAPS is an association of 9,000 members that advances the capacity of pharmaceutical scientists to develop products and therapies that improve global health.
Inspire @InspireIsHealth
17K Followers 12K Following To patients, Inspire is the world’s largest health community. To life sciences companies, we are the leading patient engagement & real-world evidence platform.
Alessandra Renieri @RenieriAle
383 Followers 479 Following MD-PhD leading one of the biggest Medical Genetics center in Italy at University Hospital in Siena for genetic counselling/test & gene editing in rare diseses.
Naomi Wagner @Naomi_CGC
2K Followers 2K Following Ocular & rare disease genetic counselor 👁🧬 | @ShileyEye @UCSDHealth 🏥 | @BUMedicine & @pomonacollege 📚 | Opinions my own | she/her
CenterforChronicIllne... @CciSeattle
639 Followers 2K Following This account is no longer active. For the latest updates and to stay connected, follow the Center for Chronic Illness on Instagram or LinkedIn!
MayRo @MRoseRoberts
319 Followers 258 Following Chief Operating Officer @RareBeacon 🔥 | Diet Coke Addict🥤 | West Wing Aficionado📺 | Eurovision Fanatic🎤 | Keele Grad 2014🎓 | Views Are Mine 🗣Trends for United States
You might like
