Stop ALD Foundation @StopALD
The Stop ALD Foundation: Adrenoleukodystrophy (ALD) therapy development, awareness, & prevention. ALD was the disease highlighted in the film "Lorenzo StopALD.org Philadelphia, PA Joined February 2009-
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Attention ALD Families: A Stanford Research Study on Vitamin D needs the input of parents or guardians of boys with ALD. This survey is essential to design a vitamin D study that is in line with the values and interests of ALD families. Survey: f1ahhllmfjr.typeform.com/to/ClnDtZXR
The @alexTLCsupport Weekend, 20-21 November -- Bringing together those affected by genetic leukodystrophy for a weekend of talk, support & fun! eventbrite.co.uk/e/alex-tlc-com…
Is your startup's solution 10x better than the current alternative? Watch our latest #DreamitDose from @sbarsh for 5 ways to separate from the pack and beat the competition.👇 youtu.be/fOE-0BSmAEc
@StephanKempNL @LDNBSAction @aidanslaw @ALDConnect @UlfUnited Thank you for making sure this important information was corrected @StephanKempNL!
@LDNBSAction @StopALD @aidanslaw @ALDConnect @UlfUnited This is incorrect. >80% of women with ALD develop symptoms. They are not just carriers! For more, #OpenAccess publications: bit.ly/2WgjPov (2019) and bit.ly/2TOWLA6 (2014) and/or visit: bit.ly/2Y9oZnJ
Brian shares what life is like #becauseofgenetherapy @ALDConnect @StopALD #savetheboys
#BecauseofGeneTherapy Brian is an active and athletic 9-year-old. #ALD #genetherapy
Matthew, the ‘wee marvel’: One of the first #ALD gene therapy recipients: ms.spr.ly/6019V5APt #BecauseofGeneTherapy @StopALD
Learn more about the ALD Family Weekend taking place March 19-21, 2021! aldfamilyweekend.com
Exciting topline results from a Phase 2/3 trial on a new treatment for adrenomyeloneuropathy (AMN) minoryx.com/media/minoryx_…
Dr. Jörn-Sven Kühl, Department of Pediatric Oncology, Hematology and Hemostaseology at University Hospital Leipzig, discusses long-term results from Phase 2/3 Starbeam study and data from Phase 3 ALD-104 study @StopALD @bluebirdbio Bluebird Bio checkrare.com/gene-therapy-s…
@ALDConnect @StopALD @AldFamily @remember_girls @HuntersHopeFDN @aidanslaw @ALD_Raremark @RunforALD @EmDashily @alexTLCsupport It was a great day, lots of information and I felt a wonderful sense of community. What we all need in these times. Thank you @ALDConnect
Agreed. That’s why we helped drive this forward on a national level.
@StopALD @UtahDepOfHealth You need newborn screening! You need it. I know more than anybody else.
Dr. Jörn-Sven Kühl, Department of Pediatric Oncology, Hematology and Hemostaseology at University Hospital Leipzig, discusses long-term results from Phase 2/3 Starbeam study and data from Phase 3 ALD-104 study @StopALD @bluebirdbio Bluebird Bio checkrare.com/gene-therapy-s…
Register now to be part of the largest international conference focused solely on #adrenoleukodystrophy: bit.ly/aldconnect FREE for Patients, Caregivers, Advocates, Physicians/Providers, Scientists, and Researchers. ($75 for Industry). Retweet to help us spread the word!
Great to see @UtahDepOfHealth now doing newborn screening for #adrenoleukodystropy #ald! kutv.com/newsletter-dai…
#FactFriday – September is Newborn Screening Awareness Month. In 2016 X-linked Adrenoleukodystrophy was added to the recommended uniform screening panel for newborns. To learn more about this condition, check out these organizations: @StopALD @ALD_Raremark #gcchat #medtwitter
If you happen to be on the boardwalk, I’ll be the guy in the blue shirt and New Jersey flag facemask. I am the South Jersey Repoeter after all; gotta rep the brand. @WHYYNews
Deadline extended to Aug 3, 2020!
Are you a patient or caregiver for someone with a rare disease? Take this survey by July 19 from @EveryLifeOrg so they can help raise visibility of the cost of rare diseases. everylifefoundation.org/burden-study/
Are you a patient or caregiver for someone with a rare disease? Take this survey by July 19 from @EveryLifeOrg so they can help raise visibility of the cost of rare diseases. everylifefoundation.org/burden-study/
ULF @UlfUnited
509 Followers 35 Following The United Leukodystrophy Foundation is dedicated to helping children and adults who have leukodystrophy and assisting the family members and friends.
erinomnom @barkdoll_
0 Followers 85 Following
⚠️я вам за�... @NatashaxKaur
57K Followers 2K Following EQUAL OPPORTUNITY LOVER & H8R (3D)2A+Agorism is the way. X is dedicated to that, memes, and streams of consciousness, and mid selfies 🔫 Luke 22:36
American Phoenix @TheAmericanphoe
2K Followers 4K Following I am the American Phoenix. latinx is a slur! Póg mo thóin youtube channel https://t.co/GWLnU46e9l
Pete. Eurotrash appre... @crankyfucker
2K Followers 3K Following Takes swing wildly between based and unhinged. Follow at your own peril https://t.co/0LfiVBJOwg. Classical liberal/libertarian Cranky old man Sir/Sire
☘️Méche Dagdasso... @MecheDagda
339 Followers 509 Following Dóchas. Quite the Odd Fellow. Eco-terrorist adjacent. Passion for plants. Re-wilder extraordinaire.
Ken @ToflpKen
0 Followers 9 Following
Dr Aurora Pujol @PujolLab
803 Followers 2K Following Genomic Medicine to decipher Brain Metabolic Disorders, from diagnosis to therapies #RareDiseases @CIBERER @IDIBELL @Icreacommunity. One Planet. Views my own.
Rachel Anne @RachelA73182555
8 Followers 149 Following Free the Menendez Brothers! #erikandlylemenendez #lylemenendez #erikmenendez #the Menendez brothers
Jeff Blattner @jeff_blattner
5 Followers 126 Following
ElkedB @b_elked
128 Followers 404 Following Clinical Genetics @Radboudumc | genetics and neurodevelopmental disorders | loves piano, panda bears, hoola hoop and nature
A Rare Documentary @TooRare2Care
26 Followers 36 Following RARE unveils what stands between the families fighting rare disease, hoping for treatments, and the emerging groundbreaking therapies available.
TOPTAN PERAKENDE SOL�... @solingenliyim
6K Followers 2K Following Evden, işyerinden ek iş yapmak isteyenlere fırsat...
Riham Morsy @hurryberry
27 Followers 192 Following Raising awareness for ALD & adrenal insufficiency | Join us in supporting Rare Disease Day | https://t.co/lUfNpXnZj7
Ultran @Ultran88420216
4 Followers 43 Following
Ryan McDonald @ryanwmcdonald
3K Followers 2K Following Sports @Deseret. Come for the news, stay for the puns.
Maria Escolar @MariaEscolar7
2 Followers 68 Following
Vera Velli Treonze @veevi24
83 Followers 471 Following #curemusculardystrophy #raredisease #inclusivity #fshd This Disease Steals Your Smile: Our Fight Against FSHD
The Rare Brothers @TheRareBrothers
6 Followers 243 Following Rarely behaved, always cute. #RareDisease doesn’t define our life, but it is a part of our story.
StudyRare 🧬 @studyrare
4K Followers 828 Following Board prep 4 @GeneticCouns students & @TheABMGG fellows. Led by clinical geneticist @dpique12 Monthly 📧 w/ board-style q's at https://t.co/r7TJ7GJZRW
Rich Elles @RichardElles
705 Followers 1K Following 🌁 Amateur Californian 🏆 2x Ironman 🧬 Patient Advocate 🌲 Stanford Health Equity 📱 SaaS Founder
manifesting the PASS @abouttosynapse
426 Followers 1K Following MS 2.9👩🏻⚕️ Future #tweetiatrician 🩺 Neuro/Psych 🧠 Rare Diseases 🤍🖤 Vax Warrior 📖 She/Her 💁🏻♀️🌈 thots=my own #firstgen #nontrad
Elena Eberwein @elenaeberwein
250 Followers 882 Following Freelance journalist. Former Producer @The_HorseRace. Currently @gbhnews.
Gavin Bowen-Metcalf @DrBowenMetcalf
240 Followers 679 Following Course Leader and Senior Lecturer @AngliaRuskin, Cambridge | Mol. Oncology | Fellow @RoySocMed & @AdvanceHE | Trustee @AlexTLCSupport | Imperial College Alumni
@Dr. Sasha Skendzel, ... @sashaskendzelnp
99 Followers 493 Following Nursing Faculty. Mother x 3. Leader 🙌🏻. BMT Survivorship 🦸🏼♀️. Ally. Beekeeper. 🐝Astrophoto geek. BLM. Views are my own. I follow back❤️.
Sumaira Yasmeen @Sumaira342
90 Followers 215 Following Postdoctoral Associate at the University of Colorado, Boulder. Working on electron-enhanced atomic layer deposition (EE-ALD). #ALDep
Krzysztof Gajewski @gajewskik_
71 Followers 564 Following
APINNI OYO @kunleAP
367 Followers 2K Following A Catholic,an Aggerian,a political tactician,event planner,product promotion and environmental consultant.
Sabine Splittgerber @SabineSplittge1
0 Followers 23 Following
Julie Purschke @JuliePurschke
61 Followers 168 Following
Guillermo Rodriguez B... @BeyGuillermo
64 Followers 117 Following Assistant Professor @ University of Pittsburgh #Neuroscience #Oligodendrocyte #Leukodystrophy #Neuroglia #Demyelination #NuclearLamina #laminb #Als #Motorneuron
Shernan Holtan MD @sghmd
4K Followers 3K Following hematologist and bleeding-heart optimist 🌄 | clinical/translational #GVHD physician scientist | powerlifter 🏋️♀️ | novice bass player 🎸| personal views
Fundación Lautaro Te... @LautaroNecesita
216 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
Linda @LindaJAL1
92 Followers 163 Following
Kate Hikes @deltaozzimo
14K Followers 3K Following 2x Best-Selling Author 📕|🗽| Stock Trader | Philanthropist 🇺🇸 | Pro-WoodChipper | Apostate | Child of God ✝️ | Vindicated
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
LDNBSActionNetwork @LDNBSAction
71 Followers 118 Following The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening.
Oxalosis & Hyperoxalu... @OHFTweet
679 Followers 378 Following The OHF is dedicated to finding treatments and a cure for all forms of hyperoxaluria. Research is the driving force behind our mission!
Chuntao.Zh @ChuntaoZh
219 Followers 5K Following
Bryn-Erin Libman Ward @BrynErinWard
133 Followers 138 Following
Hazzaman @HazzamanH
25 Followers 276 Following Proud unionist. Workers united will never be defeated.
.. @_hwr
111 Followers 743 Following Bachelor's, Master's and PhD degrees in Computer Science. Researcher, Data Analyst, Deep Learning, Machine Learning, and AI.
Alex J. Vecchio @Vecchiology
759 Followers 1K Following Associate Prof/PI @Jacobs_Med_UB • Structural biology of tight junctions & other small membrane protein-comprised assemblies • #BillsMafia #Sabrehood
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. 👦 🧬🦓
Breaking Down Barrier... @BarriersDown
1K Followers 3K Following BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.
Ali Imran Saeed Lone @AliImranSaeedL1
51 Followers 3K Following
Anjalipal @Anjalip19196733
2 Followers 11 Following
Adrian Aoun @adrianaoun
8K Followers 807 Following Founder, CEO, Investor. @Seneca_systems, @TorchHealth (Acquired by @OpenAI)
Maiken Scott @MaikenScott
5K Followers 5K Following Host @WHYYThePulse, a weekly health+science show/podcast. Karlsruhe made, Philly forged. Kumpel, colleague, confidant.
Buffer @buffer
915K Followers 54K Following Your social media workflow in one place ✨ Scheduling, publishing, analytics & content planning. This account is managed by real humans. 💙
The Myelin Project @Myelin_Project
591 Followers 252 Following #Research #Advocacy & #FamilySupport for #Adrenoleukodystrophy (#ALD) & #Adrenomyeloneuropathy (#AMN) since 1989. #SaveTheBoys #NewbornScreening
Hootsuite 🦉 @hootsuite
6.2M Followers 1.3M Following Social media tools, tips, news, and a shoulder to cry on for social pros since 2008. Support: @Hootsuite_Help
myList @myListTweets
198 Followers 184 Following Bringing brands and their fans together around the cool stuff they make/buy/love.
Steve Barsh @sbarsh
3K Followers 1K Following Dad. Serial entrepreneur. VC. Angel investor. Builder. Problem solver.You might like
