Creatine Info @CreatineInfo
A NonProfit dedicated to the three major Creatine Deficiency Syndromes- AGAT, GAMT, and CTD creatineinfo.org Carlsbad, CA Joined September 2014-
Tweets2K
-
Followers376
-
Following125
-
Likes293
Join Momentum League Support continuous CCDS research with a monthly gift. Even $10 makes a difference! First 50 get 50% off one shop item. Let’s fuel progress together! Join now: creatineinfo.org/momentum #MomentumLeague #RareDisease
Read the 2024 CreatineINFO registry report: creatineinfo.org/wp-content/upl… Questions about the Registry? email us! [email protected]
Awareness in action! 💪 @Legacy_831 's @accesshollywood interview highlights how his Beast Games win is boosting awareness & support for creatine deficiencies & CTD research. Thank you, Jeff! Watch now: tr.ee/VtEFAb #RareDisease #CTD
Ceres Brain Therapeutics has launched a Phase 1 trial for a potential CTD treatment! 🧠 Join the virtual Town Hall April 28 at 11am EST. Submit questions by April 21! Register or request a recording: creatineinfo.org/ceres-townhall #raredisease #CTD
👟 Walk for Strength Early Bird rates through Sunday Sign up, start a team, or donate today. Let’s take steps toward a cure together 💪 creatineinfo.org/walk #WalkForStrength #RareDisease #GAMT #CTD #AGAT #TeamACD #WFS2025
The federal committee overseeing newborn screening has been dissolved, shifting the burden to each state. This threatens progress like GAMT adoption. Learn more & take action: tr.ee/jwqSpp More info: tr.ee/wbgFDW #RareDisease #ScreeningSavesLives
Walk for Strength is happening worldwide—Spain, Canada, Italy, Germany & the U.S.! 🌍 Every step counts, big or small. Start your team today & show the world how strong our CCDS families are. 💙 Sign up: creatineinfo.org/walk #raredisease #wfs2025
Early bird registration extended through April 20! 🐦 Save $5—just $25 for adults, $20 for youth. Lock in your spot, get your shirt, and join the fun! 👉 creatineinfo.org/walk #wfs2025 #creatineheroes #WalkForStrength #RareDisease
Did you catch our March newsletter? 💌 It’s full of updates on newborn screening, Walk for Strength, upcoming events, and a big thank-you to Heidi for 10 years with ACD! 👉 Read or watch: tr.ee/6KvwKh | Subscribe: tr.ee/gU6RHq #FuelingHope #RareDisease
April’s Community Chat is now available! 🌷 Topic: Growing Communication Skills with Tanna Neufeld. Learn how emotional connections support language in kids with complex needs. Watch here: youtu.be/w5RWv4WDs7c #CreatineHeroes #RareDisease
One week left to save $5 & get your Walk for Strength tee! 💙 Join us for a fun day with your team while supporting a cause that matters. Find your team: creatineinfo.org/walk #WFS2025 #CreatineHeroes
@CeresBrain Therapeutics has launched a clinical trial for a potential CTD treatment! 🧠 Join our Town Hall on April 28th at 11 AM EST to learn more & ask questions. 🔗 Register/submit questions: creatineinfo.org/ceres-townhall Miss it? Request a recording! #RareDisease #CTD
Early Bird Registration is Open! Join us for the Walk for Strength! Team up, start your own, or walk solo. Everyone’s welcome! Sign up now to save $5 & guarantee your exclusive Walk for Strength t-shirt. Register: creatineinfo.org/walk #CreatineHeroes#WFS2025
April’s Community Chat: Growing Communication Skills with Tanna Neufeld! 🌱 🗓️ April 4 | 🕒 3 PM EST Discover how social-emotional connections help language grow in kids with complex communication needs. Register: tr.ee/4ETaG6 #CreatineHeroes #RareDiseaseAwareness
🎉 Last year, 31 teams raised $131,110! This year, for our 10th annual walk, we’re aiming for 40 teams & $200K! Get creative: Push-up challenge Group hike Block party However YOU walk, we’re here to support you! 🚶♂️Sign up: creatineinfo.org/walk #WalkForStrength #RareDisease
VA RUSP alignment bill passed! Est adoption: 2025! ACD nominated GAMT for the RUSP, one step closer to more newborns being screened! Now, we’re pushing for CTD screening too. Join the fight for newborn screening! 🔗 tr.ee/omXhhu #ScreenCreatine
SibTalks is back in April! Last time, the younger group got creative with drawing & a dance party, while the older group had a blast with a virtual scavenger hunt. 📅 Register now: creatineinfo.org/sibtalks #FuelingHope #RareDiseaseAwareness
Registration Opens April 1st! Step up for a cure! Walk for Strength registration opens April 1st, and you’ll save $5 when you sign up by April 14th. Join us to raise awareness & funds for creatine deficiencies. Every step counts! Find your team: creatineinfo.org/walk #WFS2025
🧠 Thank you, Frontiers in Neuroscience! We’re excited to share this peer-reviewed article on efforts to accelerate diagnosis & develop treatments for Creatine Transporter Deficiency. 🔗 Read here: tr.ee/aJQy6V #CreatineResearch #ACDResearch #RareDisease
Missed the March Community Chat? Catch up now! How is a creatine deficiency diagnosed? What is mosaicism? What does X-linked mean? 📺 Watch now: tr.ee/oQ780D #CreatineDeficiency #RareDisease
The Journal of Inheri... @JIMD_Editors
3K Followers 816 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.
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
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.
Curtis Coughlin II @CoughlinIi
265 Followers 368 Following Scientist | Bioethicist | Genetic Counselor
Zu @Thinking_of_Zu
59 Followers 1K Following
Ben E. Davis @TheBenEDavis
106 Followers 364 Following Singer / Songwriter: New single “Hometown” currently streaming on all platforms👇🏘️🇺🇸👇
Calvin Hawe @calvin_hawe
138 Followers 2K Following Chemistry Research Associate @OctantBio; Former Biochemistry Student at Notre Dame @NDscience Substack Blog: https://t.co/17S0GIfNnY
Kev Silver🥈 and 5 ... @liberty33_1_3
380 Followers 1K Following ✝️ 💻 🎲 🃏 🐘 🐍 🐻 #evangelism #politics #technology #nerdom fintech software dev, nerd, conservatarian, Christ follower, married father of 4.
Tiltify @tiltify
24K Followers 2K Following Community-driven fundraising, built for how people live today | Need help? Email [email protected]
Mr. Pickles @slavypickles
193 Followers 5K Following Catholic, Family Man, American, Science Teacher, Flawed Individual; Sometimes I retweet things just so I can save them in my timeline. No crypto-/porn-bots!
Sherri @Arc1Sherri
164 Followers 532 Following Just a stay-at-home mom mapping the structure behind identity. My lens is systems‑level and recursive. Purely literal or linear thinkers may have a bad time.
Seth Cutler @sethhcutler
3 Followers 35 Following NIMH Postbac Research Fellow - SDAN/NBPS Pediatric Neuropsychology, Neurodevelopmental Disabilities, and Language | @URochester Alumni
Rare & Ready Coalitio... @rare_ready
265 Followers 189 Following Activating on state policies that ensure those with rare conditions get the care they need, when they need it. Social media guidelines https://t.co/6ZYhchAmHS
Susan Devereux @devereux_susan
6 Followers 5K Following
Eli Langer @EliLanger
14K Followers 3K Following Knicks fan since the early ‘90s • Launching AI at @MaigrateAI • Host of Kosher Money on the @LivingLchaim Network • CEO at @HarvestingMedia • Previously @CNBC
Shabnaz Shikder @shabnaz21
93 Followers 481 Following Graduate Pharmacist | SEO professional Freelance #SEO #ContentWriter #ContentMarketer on @Upwork & @Fiverr
Anthony Esposito @AnthonyEsposito
621 Followers 430 Following Video Production | Vlogger | Music Producer | Business Inquiries | Life Reviewer | https://t.co/jhAsrwGQWk
Anointed01 @_Anointed01
133 Followers 306 Following
Amir @viksra
6K Followers 3K Following Aspiring #1 philanthropist. Seen in @NYTimes @NYTMag @FT @WSJ @NYPost #AI #Aviation #Business #Crypto #Tech #Travel ✈ Early adopter. I get things done.
ATXCardsFan @ATXCardsFan
2K Followers 6K Following Devoted #husband and #father. #OpticalNetworkEngineer. #Veteran Die hard #UofL #Cards fan. #NativeAmerican #Chickasaw
TeslaMARS @TeslaMars_1855
2K Followers 5K Following Tesla and SpaceX fan. Robotaxi, Optimus, and Starship will change the world. Getting humans to Mars is the Ultimate goal. Ex-Engineer | Golfer | Spartan Grad
Jacob Zwick @jacobzwickk
166 Followers 184 Following
🎧 Firecyyy 🎵 @Firecyyy
97 Followers 364 Following naya | ONCE | GLLIT | Jeemin ult 🩵 | also a Belieber | My music taste is horrible ignore me |
Tanner Bacon @tannerbacon
116 Followers 750 Following
CODY STRiCKLAND @hopewellcody
1K Followers 1K Following The Number 1 Kombucha Icon That Follows The Teachings Of Jesus 💪🏽World Record Holder for #kombuchachug 💪🏽Married to a literal Angel
Interactive-Bowling @theibowlapp
61 Followers 475 Following Get ready for a revolution in the of world bowling! Coming soon. #UpgradeYourGame Want to improve your game? Don't have a coach? You will soon!!!
¡VampiDroid! Apps y ... @VampidroidM
113 Followers 2K Following
A @Tanksawfully
11 Followers 556 Following
GREEN SESSION @grnsession
6 Followers 57 Following Empowering wellness enthusiasts to achieve their peak potential through the synergy of natural ingredients and the transformative power of cannabinoids.
Antoine Delinière, M... @ADeliniere
132 Followers 403 Following Cardiologist. Inherited Arrhythmias & Cardiogenetics | Reference Centre for Inherited Arrhythmia - Lyon Louis Pradel Hospital @CHUdeLyon @MeLiS_Lyon @UnivLyon1
Yizi Health @YiZi_Health
27 Followers 652 Following Producing Full Stage Health Food One-Stop Service From R&D Production To Packaging Serves for global health nutrition brands professionally and sincerely
Mayra Gallegos Rivas @MayraGallegosR3
3 Followers 83 Following
sherloqswoles @sherloqswoles
67 Followers 796 Following
Adream @Adream729210
25 Followers 3K Following
Gustavo Humeres🇦�... @LicHumeres
371 Followers 4K Following 📊 Prof. Estadística UNSAM 📝 Metodología de Inv. Científica 📈 CEECS (UBA) 🧬 Phd Student 💙 #RStats Data Science 📝💪🏼 Exercise & Health
Kelsie @yaagirlkelsie
38 Followers 174 Following
Citrin Foundation @citrinfdn
64 Followers 82 Following A research-driven, non-profit organization dedicating USD30m to tackle citrin deficiency over the next decade. We fund research and provide patient support.
TribalMother @AwarePatriots
143 Followers 633 Following Co-Founder, Greater Utah Lacrosse League, Financial Advisor, RIA & LUTCF and MotherSuperior to my 5 kidlets.
HumanFirst @Humanistplanet
306 Followers 5K Following Virtual Nomad. Techie. Encyclopedia. Philonoist. Humanity. Peace. Save Nature. Brain Tumor(Meningioma) Survivor/ScarEpilepsy. - Opinions/Retweets are personal.
Andrea Cross @cross_acc
514 Followers 442 Following Assistant Professor, Department of Pediatrics, McMaster University
Rare Disease Day @rarediseaseday
42K Followers 3K Following 28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay
The Journal of Inheri... @JIMD_Editors
3K Followers 816 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.
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
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.
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
Rx4good @rx4good
1K Followers 2K Following We empower organizations to deliver on their promise to put patients first. Watching patient-centric initiatives, health tech and advocacy/industry trends
The Iced Coffee Hour @TheICHpodcast
22K Followers 2 Following Podcast Hosted By @GrahamStephan & @jackselby27. Listen now ⬇️
Purdue University @LifeAtPurdue
127K Followers 11K Following The official account of Purdue University, home of the Boilermakers! The persistent pursuit of #TheNextGiantLeap 🚂
California Institute ... @CIRMnews
15K Followers 524 Following Accelerating world class science to deliver transformative regenerative medicine treatments in an equitable manner to a diverse California and world
NHS England @NHSEngland
508K Followers 2K Following We lead the NHS in England to deliver high quality services for all.
Department of Health ... @DHSCgovuk
630K Followers 2K Following We support ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer.
Australian Dept of He... @healthgovau
124K Followers 175 Following Updates, news & information from the Australian Department of Health, Disability and Ageing. Email questions: [email protected]
ClinGen @ClinGenResource
10K Followers 123 Following Sharing Data. Building Knowledge. Improving Care. NIH-funded resource established in 2013.
Baby's First Test @BabysFirstTest_
161 Followers 260 Following Baby's First Test is the nation's newborn screening education resource center for families and health professionals.
ACMG @TheACMG
18K Followers 4K Following American College of Medical Genetics and Genomics (ACMG): Translating Genes into Health® @GIMJournal #ACMGMtg26 #ACMGFoundation Site Use https://t.co/9QchBLtCEG
Carlsbad Chamber, CA @ChamberCarlsbad
6K Followers 1K Following The voice of business in #Carlsbad, CA for more than 95 years - #Business, Beach, and Sun. We love it here. Our members do too.
FAST @cureangelman
2K Followers 642 Following Dedicated to finding a cure for Angelman syndrome, to bring practical treatment into current medical practice as quickly as possible.
brandon prescher @brandonprescher
3 Followers 55 Following
Carol Dutch @caroldutch
5 Followers 10 Following
Jeffrey Randall Allen @Legacy_831
3K Followers 990 Following Rare Disease Dad | Dream Galvanizer | Excited for the Future Jeff - Player #831 on @MrBeast #BeastGames https://t.co/LGUr6HUtX8
Jane Mac @janechirps
139 Followers 205 Following Lover of dogs. Reader of books. Lifelong learner. All abilities advocate.
The Patient-Centered ... @PCORI
21K Followers 1K Following PCORI funds patient-centered comparative clinical effectiveness research (CER). Links, RTs, favorite ≠ endorsements/advice.
Dr Ahmad Al-Odaib �... @AOdaib
813 Followers 241 Following Consultant Clinical Scientist & Section Head @KFSHRC | Adj Prof @PittTweet & @Alfaisaluniv | Alumni ABMGG Clinical Fellow @ChildrensPgh #coffeeaddict
Louise Fets @louise_fets
915 Followers 1K Following Researcher with an interest in pharmacology and cancer metabolism, Group Leader @MRC_LMS & CRUK Career Establishment Awardee, Postdoc @thecrick, PhD @mrc_lmb
RESOLUTE - Research E... @RESOLUTE_IMI
1K Followers 2K Following The RESOLUTE & REsolution IMI consortia aim at triggering an escalation in the intensity of research on Solute Carriers (SLCs) transporters worldwide.
Claire Colas @ColasClaire
272 Followers 505 Following Computational biologist - Structure-based drug design - Solute Carrier Transporters - @[email protected]
sarah.e.donoghue @sarahedonoghue1
215 Followers 195 Following Paediatrician, Clinical Geneticist, Metabolic Physician. PhD candidate Determined to improve diagnosis and treatment of genetic diseases. Views are my own.
University of Utah He... @UofUHealth
21K Followers 4K Following University of Utah Health is the Mountain West's only academic health care system.
The Hospital for Sick... @SickKidsNews
57K Followers 2K Following Official Twitter account for The Hospital for Sick Children (SickKids). Our vision: Healthier Children. A Better World.™ Account not monitored 24/7.
CNR Consiglio Naziona... @CNRsocial_
23K Followers 4K Following Notizie eventi comunicati stampa e immagini dal CNR WhatsApp https://t.co/xusKqBRoRO Instagram https://t.co/o5pBXln7V3 Social media policy https://t.co/w4LClyINjV
UVA School of Medicin... @MedicineUVA
4K Followers 238 Following UVA School of Medicine: to educate and train physicians, to help people achieve healthy productive lives, and advance knowledge in the medical sciences.
Université d'Ottawa ... @uOttawa
43K Followers 433 Following ✨ Université canadienne d’excellence en enseignement, recherche et innovation ✨ Top Canadian university for learning, research, and innovation #uOttawa
FranziHaderk @FHaderk
275 Followers 880 Following Scientist, Research interests include: #targetedtherapy, #exosomes, #cancer, #drugresistance, #tumormicroenvironment
ARUP Laboratories @ARUPLabs
8K Followers 2K Following ARUP is a national, academic reference laboratory aiming to improve patients' lives through advanced diagnostic medicine.
Sangeetha Iyer @IyerSangeetha
424 Followers 140 Following Rare disease and neuroscience researcher, worm geek, drug aficionado, tree hugger
Rare Genomics @RareGenomics
9K Followers 3K Following RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.
RareNewEngland @RareNewEngland
662 Followers 466 Following Rare New England's Mission is to bring together New England patients and families touched by rare and complex disorders. We build foundations for support, creat
Haystack Project @HaystackProject
166 Followers 257 Following We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Alzchem @Alzchem
117 Followers 0 Following
HPS Network @HPSNetwork
985 Followers 2K Following Hermansky-Pudlak Syndrome, a type of albinism that causes low vision as well as a bleeding disorder. It can cause a Crohns-like GI problem/pulmonary fibrosis
CHI @congenitalhi
2K Followers 2K Following Improving the lives of babies, children, and adults with hyperinsulinism (HI) by supporting HI families, research, and awareness to prevent brain damage & death
Andra Stratton @livinlavidalopo
1K Followers 518 Following Co-Founder of Lipodystrophy United Program Associate for #RareAsOne @CZIScience. Always hungry. Sometimes funny. Opinions are my own.
KAT6 Foundation @KAT6foundation
498 Followers 84 Following We support individuals who are living with KAT6A and KAT6B syndromes around the world. 🧬 We advance research aimed at developing treatments.
The DDX3X Foundation @ddx3x
281 Followers 89 Following The DDX3X Foundation is a non-profit founded in 2016 to help find a cure for the DDX3X Gene Mutation. Visit us at https://t.co/scP8CHPvdt
DADA2 Foundation @dada2foundation
375 Followers 260 Following We're a nonprofit looking for innovative ways to accelerate research into the rare inflammatory disease DADA2.
CureGRIN @CureGrin
743 Followers 328 Following CureGRIN is a parent-run foundation committed to improving the lives of people living with GRI disorder. #RareAsOne #GRIdisorder #raredisease
Cure HHT @curehht
1K Followers 792 Following Cure HHT is the only organization in the US advocating for research, education and a cure for Hereditary Hemorrhagic Telangiectasia, Osler-Weber-Rendu Syndrome
Cure CMD @CureCMD
648 Followers 153 Following Cure CMD’s mission is to advance research toward treatments for congenital muscular dystrophies and empower those living with CMD.
CRMO Foundation @CRMOFoundation
350 Followers 167 Following Supporting CRMO patients by furthering the efforts of life-changing research, increasing access to resources and education and promoting awareness. #RareAsOne
CLOVES Syndrome Commu... @CLOVESSyndrome
1K Followers 1K Following Support, Research & Education to improve the quality of life for ppl with CLOVES. Rare, progressive disease with a + PIK3ca mutation. Tweets by @kristenpdavis















