HCU Network America @HCUAmerica
The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica linktr.ee/hcuna United States Joined March 2017-
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We're excited to have almost 1⃣0⃣0⃣ patients enrolled in our Homocystinurias Data Collection Program! Join the global movement 🌎 Head to ➡️ homocystinuria.rare-x.org to register & get started! #research #treatment #homocystinuria #cobalamindisorders #severeMTHFR #HCU @RARE_X_
Join our community's own Liz Carter! She'll be a panelist on a webinar this Thursday called "Charting the Future: Exploring Trends in Family Leadership for Systems Change", brought to you by @ExpectHealthOrg ! ➡️ Register here: bit.ly/3UBXBhx
📣 Exciting news! 📣 The Acappella Natural History study is now enrolling ages 1-4 with Classical HCU! You may be able to receive payment for your time and travel if your child participates in this study. ➡️ For more info, visit hcuconnection.com
We are only 2 months away from our #MovingMountains Family Conference in Aurora, Colorado! 🏔️ We've got an epic speaker lineup, incredible breakout sessions, an amazing KidZone program, and of course a #lowprotein menu! Join us! ➡️ To register, visit: bit.ly/hcuconference2…
Now accepting request for proposals! Find more information ➡️ bit.ly/24HCURFP Deadline to submit is June 25, 2024. @RareDiseases @GlobalGenes @RARE_X_ @SIMDtweets @gmdi
New episode of the HC&U: A Homocystinuria Podcast out NOW!🎙️ ➡️ Catch it on Spotify, Apple Podcasts, iHeart, or Amazon Music! Or hcunetworkamerica.org/hcu-podcast/ #podcast #raredisease #advocacy #lowprotein #advocacy #research #diagnosis #homocystinuria #HCU #HopeConnectsUs
This exciting event, hosted by PKU Organization of Illinois, is open to anyone with an IEM and their families! 🎣 🛶⛺️ IEM campers are FREE and family members are just $10 each! ➡️ Learn more/register here: bit.ly/3TKWdJc
We've got an epic speaker lineup for our #MovingMountains2024 Homocystinuria Family Conference! 🗻 We're excited to welcome Thomas McCorvie, PhD! Dr.McCorvie will share some exciting information about his latest research on Classical HCU! Join us! ➡️ bit.ly/hcuconference2…
World Homocystinurias Day is coming! Get your t-shirt in our Bonfire (one for classical, cobalamin, and severe MTHFR) through April 25 to receive in time for #WHAD2024 on May 18! 👕 bonfire.com/store/hcu-habe…
🚨 TONIGHT @ 7 pm ET! 🚨 Join HCU Network America on & meet with leaders of @flokhealth (formerly PKU News). We'll talk about programs like Family Camp, the flok app, & take any questions you may have for the flok team. ➡️ Register: bit.ly/3Tp7jmY #flokhealthapp
We invite you & your colleagues to submit a poster abstract for the 4th HCU Patient-Expert conference. Trainees are encouraged to submit. Accepted poster presenters must register for the symposium & be present. ➡️ Email [email protected] for further details!
World Homocystinruias Day (#WHAD2024) is happening in 1 month!! 🎉 This year's theme is 'Help Navigate the Maze', & we've got all sorts of excitement planned - virtual raffle, a live panel discussion, tshirt sale & more! The fun starts in May - keep your eyes peeled 👀
Thx to the experiences shared by caregivers in our homocystinurias Rare-X DCP, we have more insight into the quality of life of our pediatric patients. Complete the Quality of Life Survey by 5/20/24! Head to ➡️ homocystinuria.rare-x.org to get started! @RARE_X_
We've got an epic speaker lineup for our #MovingMountains2024 Family Conference! 🗻 We're excited to welcome Sagar Vaidya, MD, PhD, VP of Clinical Development @ Travere Therapeutics to share updates on Pegtibatinase. Join us - Register here: ➡️ bit.ly/hcuconference2…
Happening this Saturday! Our Pizza Party get-together at Blaze Pizza in Charlotte, NC! 🍕🍕 We hope to see you there!!!
🚨 Exciting opportunity alert! 🚨 Are you someone who: 🔹 Benefits from 1:1 coaching? 🔹 Wants guidance in identifying advocacy goals? 🔹 Desires extra support in building relationships with legislators? Learn more: bit.ly/3VX57o7
Join HCU Network America on & meet with leaders of flok (formerly PKU News). We'll talk about programs like Family Camp, the flok app, & take any questions you may have for the flok team. We hope you can join us! ➡️ Register: bit.ly/3Tp7jmY #flokhealthapp
With Dr. Kim Chapman's help, we will present a poster at #SIMD2024! Come check out our poster (#37), HCU Network America Patients Surveys Help Define What is Important to Patients to see if you are on the same page as patients and caregivers!
We're excited to discuss the case for collab b/t patient advocacy orgs & clinicians to improve care & connection in the metabolic community at the joint session of Society for Inherited Metabolic Disorders (SIMD) & Genetic Metabolic Dietitians International (GMDI). Join us!
🎙️ New Podcast episode drops 4/25! Ben welcomes Samantha Stallings, #HCU patient & advocate, who will share her experiences living with multiple #rarediseases & her incredible #advocacy work! ➡️Catch it on Spotify, Apple Podcasts, iHeart, or Amazon Music!
The Journal of Inheri.. @JIMD_Editors
3K Followers 877 Following The JIMD is the official journal of the Society for the Study of Inborn Errors of Metabolism (SSIEM). Podcasts at https://t.co/QZggmJr9Of
Alvaro Hermida @Info_Rares
2K Followers 1K Following Specialist on Metabolic Diseases and always looking on the bright side of life.
AECOM&Sociedad @AECOMySociedad
967 Followers 452 Following Grupo de trabajo 📚 de la Asociación Española para el Estudio de los Errores Congénitos del Metabolismo https://t.co/HSfhPzIr1o 🧬🩺#ErroresInnatosdelMetabolismo
NSPKU @NSPKU
3K Followers 1K Following The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see https://t.co/f9QHejwhkW
ACIMET | Asociación .. @ACIMET_MMA
651 Followers 1K Following Asociación de afectados y familiares con acidemia metilmalonica. #Enfermedadrara #metabólica #genética 🧬. 1/60.000 nacidos 👶 48 casos. 🗺️https://t.co/hxtLUmdb9P
Amy Gaviglio @agavig
498 Followers 350 Following Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
Familias GA @GA1Familia
577 Followers 923 Following Asociación sin ánimo de lucro de familiares, amigos y pacientes con Aciduria glutárica tipo I y 2
AECOM, Enfermedades R.. @Aecom_EIM
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Pedro Lendinez #Enfer.. @pelendinez
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James Nurse @DrJNurse
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Organic Acidemia Asn @OrganicAcidemia
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Bernadette Sheehan Gi.. @sheehangilroy
1K Followers 5K Following Lecturer @MTU_ie Researcher @DCU Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile"
Sander Houten @SanderHouten
895 Followers 887 Following Scientist | Clinical Biochemical Geneticist | Icahn School of Medicine at Mount Sinai | husband | father | runner | Dutch | New Yorker
Oleg Shchelochkov, MD @GenomicsMatters
753 Followers 533 Following Director of NHGRI Residency and Fellowship Programs @genome_gov, #NIH, https://t.co/vumZovgvFX. Tweets my own. RTs are not endorsements.
Elena D @ElenaDF75
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StudyRare 🧬 @studyrare
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Synlogic @synlogic_tx
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Patients & Providers .. @NutritionEquity
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Kai Shiang Lin @FrankKLin94
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Behind the Mystery @btmcaresforrare
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Mayank Saraswat @MK_saraswat
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Dr.partha Karmakar @drpartha_dr
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smr naqvi @Kvasae
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Mãe Especial @gismteles
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Prasanna Shirol @Prasannashirol
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KM Wit @KazWitek
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Samdaniel Sutanto, M... @samdaniel_med
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Jill C @CJill85302
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Nathan Cantley @NathanWPCantley
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Oxford-Harrington Rar.. @OHRareDisease
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Nought @Nought54839
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Bengu Arslan @BenguArslan9
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ゆきだるま @8DPpVTIBkJgBxM4
16 Followers 69 Following
AAA doing my best @tryingmybest_A
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धापाखेल.. @RAMs60326917
8 Followers 181 Following 🌏) बुढेसकालमा छोराछोरीले सम्पत्तिको भाग मागे भने😁 Facebook जेठो छोरोलाई Instagram कान्छो छोरोलाई र Twitter चाँहि आफैलाई जिउनि राख्नु पर्ला😉
rareparenting @rareparenting
262 Followers 762 Following Online magazine for parents of children with #disabilities, #rarediseases and #specialneeds
Inmaculada González @Inmaggenet
156 Followers 227 Following laboratorio de genética bioquímica en HCUV Arrixaca Murcia . Detección y Prevención "Cribado Neonatal" Diagnostico de ECM .CARM
Teresa Glatz @GlatzTeres57467
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Helen W. Hernandez @Hg_Chemistry
264 Followers 684 Following Life-long learner. Founder of KAL Reseach Initiatives, LLC. Opinions here are my own.
Dan @daniel_eguda
549 Followers 2K Following CEO-MARKETING STELL crypto........freelance web2 airdrop hunter web3.....Blockchain tech EDUCATIONIST ECONOMIST Madrid for life #halamadrid
Madam Butterfly. @michellecheatle
870 Followers 515 Following What the brain doesn't know, the eye doesn't see. Has a #B12 in her bonnet. #VitaminsB4Pharmaceuticals #B12dTalks #B12Advocates
Claes G Andersson @Classe50G
24 Followers 866 Following
essentiallyjody @essentiallyjody
571 Followers 3K Following Sharing information on health and healing the natural way with Essential Oils. Feel free to share and ask questions. http://t.co/6K1iIumJLJ
Andrea Cortes @AndreaC241
21 Followers 60 Following Clinical Genetics Fellow @ChildrensColo , Future Biochem Fellow. Pediatrician. Colombian. IMG.
SOURIK DEY @DeySourik
246 Followers 789 Following Synthetic Biology Enthusiast || PhD Student at Leibniz Institute for New Materials, Saarbrucken
Caroline Kurtz @CarolineKurtz4
3 Followers 21 Following
Wong Pak Kwong @kwong_pak80320
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Ferdinand von Meyenn @vonMeyenn
484 Followers 243 Following Group leader @ETH interest in the interplay between Nutrition, Metabolism and Epigenetics from whole organism to single cells
g woodward @gwoodwa98405582
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PKU GOLIKE – Feel t.. @GOLIKEmetabolic
484 Followers 738 Following Brandnew medical food for a real change in dietary management of inborn errors of metabolism. #PKU
Kuntal Sen, MD, FACMG @kuntal_sen_
750 Followers 1K Following Co-Director, Neurogenetics Clinic, @ChildrensNatl 🇮🇳 🇺🇸 🏳️🌈 Asst Prof Genomics, Pediatrics & Neurology, GWU. Media Editor @pedneurojournal
Rare-X @RareX_2024
114 Followers 345 Following Rare-X 2024, Africa's leading conference on rare disease treatment and access, will be taking place at Indaba Hotel, Johannesburg from 14-17 February 2024
Mr DAHMAN @DahmanMr19842
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Pediatrics Directory @PedsDirectory
57 Followers 362 Following The Pediatrics Directory is the information crossroads for the various professionals who care for children, and their families as well.
The Journal of Inheri.. @JIMD_Editors
3K Followers 877 Following The JIMD is the official journal of the Society for the Study of Inborn Errors of Metabolism (SSIEM). Podcasts at https://t.co/QZggmJr9Of
Alvaro Hermida @Info_Rares
2K Followers 1K Following Specialist on Metabolic Diseases and always looking on the bright side of life.
Anita MacDonald @macdonj
2K Followers 661 Following All tweets discuss low protein foods to help children on low protein diets. All views are my own.
AECOM&Sociedad @AECOMySociedad
967 Followers 452 Following Grupo de trabajo 📚 de la Asociación Española para el Estudio de los Errores Congénitos del Metabolismo https://t.co/HSfhPzIr1o 🧬🩺#ErroresInnatosdelMetabolismo
NSPKU @NSPKU
3K Followers 1K Following The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see https://t.co/f9QHejwhkW
ACIMET | Asociación .. @ACIMET_MMA
651 Followers 1K Following Asociación de afectados y familiares con acidemia metilmalonica. #Enfermedadrara #metabólica #genética 🧬. 1/60.000 nacidos 👶 48 casos. 🗺️https://t.co/hxtLUmdb9P
Amy Gaviglio @agavig
498 Followers 350 Following Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
Familias GA @GA1Familia
577 Followers 923 Following Asociación sin ánimo de lucro de familiares, amigos y pacientes con Aciduria glutárica tipo I y 2
Dra A. García-Cazorl.. @AGarciaCazorla
2K Followers 2K Following Child Neurologist and Researcher Neurometabolism-Synaptic Metabolism Lab. Director of Research in #Neuropediatrics @SJDbarcelona_es Prof at UB. Tweets my own
AECOM, Enfermedades R.. @Aecom_EIM
629 Followers 270 Following AECOM. Asociación Española mutiprofesional dedicada a las Enfermedades Metabólicas Hereditarias (EIM). 🩺🧬Integrada en la Sociedad Europea de EIM (SSIEM)
Pedro Lendinez #Enfer.. @pelendinez
5K Followers 2K Following #EnfermedadesRaras #MasVisibles. ¿Te sumas? ¡Juntos llegaremos más lejos! Opiniones personales.
James Nurse @DrJNurse
2K Followers 387 Following Father. Consultant paediatrician. Hockey player. Interested in IMD and Medical Education. Social Media editor at @JIMD_Editors
Organic Acidemia Asn @OrganicAcidemia
963 Followers 1K Following The Organic Acidemia Assn, our mission is to support families, share awareness of organic acid disorders, fund research for better treatments & advocate NBS.
Bernadette Sheehan Gi.. @sheehangilroy
1K Followers 5K Following Lecturer @MTU_ie Researcher @DCU Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile"
Sander Houten @SanderHouten
895 Followers 887 Following Scientist | Clinical Biochemical Geneticist | Icahn School of Medicine at Mount Sinai | husband | father | runner | Dutch | New Yorker
Louise Robertson @louisedietitian
3K Followers 900 Following Dietitian 💁🏻Specialising in Inherited Metabolic Disorders🍴Dietitian for @galactosaemia 🍎Nutrition blogger 💻 Tweeting own views.
Oleg Shchelochkov, MD @GenomicsMatters
753 Followers 533 Following Director of NHGRI Residency and Fellowship Programs @genome_gov, #NIH, https://t.co/vumZovgvFX. Tweets my own. RTs are not endorsements.
Natasha B. @Nat_Bonhomme
906 Followers 2K Following Putting families at the center of health- Founder @ExpectHealthOrg - Dir. @BabysFirstTest_ #maternalhealth #BlackInGenetics Travel and Patio time 🙌🏾 🇭🇹
Elena D @ElenaDF75
4K Followers 3K Following Atareada. Endocrinología y Nutrición. Dedicada a lo raro #TCA Errores innatos metabolismo #Hipófisis. Tutora #MIR con ilusión @EndocrinoHUVR @HospitalUVRocio
StudyRare 🧬 @studyrare
4K Followers 907 Following Board prep 4 @GeneticCouns students & @TheABMGG fellows. Led by clinical geneticist @dpique12 Monthly 📧 w/ board-style q's at https://t.co/r7TJ7GJZRW
Coughlin Lab @Coughlin_Lab
43 Followers 23 Following A translational research lab whose mission is to improve the lives of individuals with inborn errors of metabolism.
Megadonion @Megadonion
79 Followers 85 Following Christian. Entrepreneur. Someone who always lives on the edge. Rare disease advocate. Founder of rare disease advocacy organization. MAGA FIGHTER!!!
Lauren Dwyer MPH, MBA.. @Dwyer_Lauren_
23 Followers 299 Following rare disease patient advocate metabolic dietitian - nephrology medical science liaison
Oxford-Harrington Rar.. @OHRareDisease
1K Followers 1K Following Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
Matt Tschirgi, CGC @Matt_Tschirgi
3K Followers 4K Following Genetic counselor, #entrepreneur, #adoptive dad, consultant, UTHSC-H. Opinions belong to me and my #DNA. #GoCougs! #GeneChat #NerdGang
Louise Lamaris 💙 @LouLamaris
232 Followers 222 Following REPs qualified #ExerciseToMusic #Fitness Instructor and Personal Trainer 🏋️♂️🤸 Marketing Specialist, Mum, #Runner and #PKU adult.
Bengu Arslan @BenguArslan9
10 Followers 124 Following çocuk metabolizma hastalıkları pediatrics. inherited metabolic diseases
rareparenting @rareparenting
265 Followers 762 Following Online magazine for parents of children with #disabilities, #rarediseases and #specialneeds
flok @flokhealth
22 Followers 2 Following Redefining clinical care and research priorities in metabolic health through the power of patient data.
RarasNoInvisibles @NoInvisibles
54K Followers 8K Following Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
Inmaculada González @Inmaggenet
156 Followers 227 Following laboratorio de genética bioquímica en HCUV Arrixaca Murcia . Detección y Prevención "Cribado Neonatal" Diagnostico de ECM .CARM
Andrea Cortes @AndreaC241
21 Followers 60 Following Clinical Genetics Fellow @ChildrensColo , Future Biochem Fellow. Pediatrician. Colombian. IMG.
SOURIK DEY @DeySourik
246 Followers 789 Following Synthetic Biology Enthusiast || PhD Student at Leibniz Institute for New Materials, Saarbrucken
Ferdinand von Meyenn @vonMeyenn
484 Followers 243 Following Group leader @ETH interest in the interplay between Nutrition, Metabolism and Epigenetics from whole organism to single cells
Howard Salis @hsalis
4K Followers 253 Following Assoc Professor of synthetic biology, biological, & chemical engineering. De Novo DNA founder. Engineering microbes with predictive models & algorithms.
Kuntal Sen, MD, FACMG @kuntal_sen_
750 Followers 1K Following Co-Director, Neurogenetics Clinic, @ChildrensNatl 🇮🇳 🇺🇸 🏳️🌈 Asst Prof Genomics, Pediatrics & Neurology, GWU. Media Editor @pedneurojournal
Sinead Hughes @SineadHughes19
2K Followers 3K Following Mummy, wife, NHS Consultant Cardiologist, Derry. Imaging, HF/ Amyloid & prevention main interests.
R.Sono🔬💻🧬 | .. @mona8schmona
805 Followers 995 Following AP/CP → CI fellow → MGP fellow → research/clinical instructor. 💙s languages (日本語 土佐弁 / 台語 / Nahuatl) & nat sci. Cat life. 分子遺伝子病理と臨床情報と言語の猫又Mnemofelis furcatus
HJ @JakubowskiHier1
27 Followers 29 Following
Christina Sidira @matildaki87
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Tika Tkemaladze @TikaTkemaladze
304 Followers 491 Following Clinical geneticist, Head of the Department of Molecular and Medical Genetics, Tbilisi State Medical University, ESHG board member, FDNA scientific board member
SSIEM @SSIEM2023
167 Followers 65 Following Discover insights in neurometabolism, therapeutic advances, Mitochondrial Disorders, and more at SSIEM 2023.
ThinkGenetic Foundati.. @ThinkGeneticFdn
102 Followers 133 Following A Non-Profit 501(c)3 Charity Helping to Educate and Empower Those Living with Genetic Conditions #raredisease #genetics
Andrea Gropman @AndreaGropman
428 Followers 572 Following Chief, Neurogenetics Children’s National Hospital, Professor of Pediatrics, Neurology, Genomics and Personalized Medicine, Brain imager, Screen play writer, mom
PetriBio_edu @1000yrlifespan
65 Followers 169 Following A collection of metabolic and gut microbiome longevity knowledge
Scott Shirley @scottshirley80
2K Followers 2K Following Scott Shirley I Executive Director of @UpliftingAth & CEO of @PLDGIT. I believe in the power of sport for social good. http://t.co/KGjmUevi5j.
Juanita @ju4n1t4dm
19 Followers 222 Following
Saswati Das MD,PGDHHM @diary_cc
448 Followers 2K Following Medical Specialist|Clinical Chemist| Central Health Service| Previously @NHSuk @questdiag #SpaceMedicine #GenderEquality #precisionmedicine
MAbSilico @MAbSilico
3K Followers 3K Following MAbSilico is a deeptech startup - committed to the fast discovery and development of biomarker and therapeutic antibodies
طلال العنزي.. @Dr_Talal_Alanzi
2K Followers 748 Following طبيب استشاري أطفال/ أمراض وراثية و اضطرابات التمثيل الغذائي clinical geneticist and metabolic disorders consultant
Abdullah Alfalah @Abdullah_Med
1K Followers 586 Following استشاري الوراثة السريريه واضطرابات التمثيل الغذائي.حساب شخصي Clinical Genetics & Metabolic disorders Consultant, Married to the most amazing woman 🧬🎮
Stefan Bittmann @DrBittmann
635 Followers 841 Following (1) Pediatrician; Dept of Pediatrics Gronau; (2) Visiting Professor, Faculty of Medicine, Shangluo Vocational and Technical College, Shangluo, China
Edoardo Biancalana @edoardo_bi
62 Followers 266 Following MD | Specialist in Internal Medicine @AOUCareggi | Researcher @UNI_FIRENZE | Interests: rare diseases, inherited metabolic diseases, diabetes and metabolism
Norah Jordan @DrNorahJordan
231 Followers 241 Following Principal Clinical Neuropsychologist. Humans being nice to all types of other humans. She/her.
Nour Elkhateeb @NourElkhateeb14
51 Followers 141 Following A Clinical Genetics trainee in Cambridge, interested in neurogenetics, metabolic medicine, music, poetry, and history. Always having a question to ask.
KM Wit @KazWitek
30 Followers 132 Following
Veronica @Vlopez2825
44 Followers 197 Following
Alina Grace @AlinaGrace11
680 Followers 5K Following Assistant Managing Editor of the Journal of Clinical Pharmacology and Biopharmaceutics
Steven Lang, M.D. @Steven_Lang97
248 Followers 562 Following Pediatric genetics resident physician @bcmgenetics @BCM_Pediatrics | M.D. 23' @umiamimedicine
Joanna Ball @josey1971
25 Followers 23 Following My Name Is Joanna. I am a patient advocate. I have Homocystinuria (HCU) I recently started a podcast called Nutrition Equity.
lena jafri @JafriLena
388 Followers 778 Following #consultant chemical pathologist #mother MBBS, FCPS, FAIMER fellow Philadelphia, FHEA UK Member Teachers’ Academy, MHPE KEELE UK, Associate Prof, Section Head
iCAN Research @iCANResearch
1K Followers 2K Following The International Children's Advisory Network: providing children and families a united global voice in health, medicine, research, science, and innovation.
Recordati Rare Diseas.. @RecordatiRareES
4K Followers 1K Following En Recordati Rare Diseases nos centramos en una minoría: los afectados por las #EnfermedadesRaras (poco frecuentes, minoritarias) #FocusedOnTheFew
D Anderson @Raffua62
230 Followers 650 Following
Veronica Bindi @BindiVeronica
19 Followers 116 Following
@OnceUponAGene Yes! But also for kids, please pause and consider if this is a photo they'd want on the internet or for others to see when they're older. So many medical journals have embarrassing photos and that's dehumanizing. 💚
Companies: Please show real pics of our #RareDisease kids. Not a happy/laughing/rolling in the grass fam clearly hitting your DEI ✔. Most of our kids can't even do the pincher grasp in those pics of kids holding toys. Show real rare kids. We need to 👀 them and so does the 🌎
We got to connect with the wonderful folks from @HCUAmerica at the ACMG conference not too long ago. Tune in to learn more about the impactful work they're doing. #ACMG #HCUNetworkAmerica #ACMGMtg24 #MedicalGeneticsAwareness #Genetics #Genomics #PatientWorthy #ClinicalGenetics
Interesante artículo que tiene el interés de orientar en la deficiencia de 5-10 meteniltetrahidrofolato sintetasa (MTFS; OMIN 604197) , como valorar la dosis adecuada de de 5MTHF #EnfermedadesRaras @ACIMET_MMA @Aecom_EIM @HCUAmerica @AEGHgenetica @pelendinez @AderleL @senep_es
Let's not wait and see; let's offer Exome Sequencing today! #RareDisease #GeneticTesting #CerebralPalsy #RareEpilepsies
We see you!! Thank you #LouisvilleKy #BigFourBridge #RareDiseaseAwareness
This week was Rare Disease Week & members of our HCU community were busy advocating & spreading awareness! 💙 How did YOU celebrate #RareDiseaseDay2024? Drop pics or let us know in the comments! 👇 #RareDiseaseWeek #RareDisease #RareDC2024 #homocystinuria #HCU #HopeConnectsUs
Este artículo revisa el desarrollo actual de la #terapia #génica viral y no viral para #EnfermedadesRaras hepáticas; def. del ciclo de la urea, acidemias orgánicas, enf. de Wilson, glucogenosis Ia, PKU y MSUD @RRelagh @GA1Familia @ACIMET_MMA @Glucogenosis @Aecom_EIM @HCUAmerica
Couldn’t resist! @HCUAmerica @RareRevolutionM @RareAdvocacy @GlobalGenes @mariashriver 🦓
Learning! So proud of these young, courageous leaders. @rarelikeher @G17Esiason @_OurOdyssey_ @sportssammy05 @lilannalaurent #danaebartke @HCUAmerica @LDSFoundation @MarfanFdn #GretchenMacCarrick @MgrDantastic @ConquerChiari @OnceUponAGene #SwapnaKakani #meganhilt
Hi, everyone! As Patient Engagement Consultant for Taylor Kane Consulting LLC, I’ve had the opportunity to work with numerous companies in the rare disease space, with a focus on helping them harness their relationships with the rare disease community.🧵
Excited to be at #ACMGMtg24 and visit with @HCUAmerica and Dr. Kim Chapman
Thank you @RepMcGovern for advocating on the House floor today for the 2.7 million Americans with gastrointestinal or inherited metabolic disorders who rely on #medicalnutrition. It's #TimeforMNEA
I introduced the Medical Nutrition Equity Act with @RepRutherfordFL so families impacted by inherited metabolic diseases or gastrointestinal conditions can access the specialty food and formula they need to live their lives to the fullest. Congress should pass it NOW!
CurePDE has started a youtube channel. For the first webinar we discussed the work within the #PDE and #CHARLIE consortiums. It is such an honor to collaborate with patient and advocate groups like CurePDE, @OrganicAcidemia, and @HCUAmerica youtube.com/@CurePDEFounda…
Best way to explain @HCUAmerica #RareDiseaseMonth Enlighten me. It’s just a way of life for some. Why do you think you have to eat a high protein meal? Just the opposite.
There are millions of kids with Rare Diseases. What keeps you going? Early morning before the day begins, … 🙏 🍀 ✨! Day 2 : @HCUAmerica Danae +everyone who works tirelessly for others. #patientcentric #lowprotein Not just about tacos and burritos all the time. 😘
🎉 Exciting news! I'm so happy to announce that I've been awarded an EPSRC New Investigator grant! 🚀 I'll be seeking a talented post-doctoral researcher in the new year - please spread the word!🌟 #AcademicTwitter #NewInvestigator
Exciting to share this weekend new data from improvements to the SYNB1353 fermentation process! Proud of our team's commitment to optimize this potential treatment for #HCU. Check it out: loom.ly/Qi620sE . #synbio #syntheticbiology #homocystinuria #inbornerrors
@IhabFathiSulima I believe besides putting Marfan syndrome as the first differential diagnosis, we should consider a condition called Homocystinuria regarding his scoliosis. The complications of pectus excavatum, are of course, related to the compression to heart and lungs. There are two ➡️
At the recent #SSIEM2023 meeting, we presented a satellite symposium on our investigational product in development for classical homocystinuria that is now available online at bit.ly/49DUvPE. #InRareForLife #classicalHomocystinuria #HCU #SSIEM
Immensely thrilled that this is popular and privileged to have worked with @JIMD_Editors @FroeseLab on my maiden podcast performance. Of course this is all down to the most beautiful and fascinating cobalamin/B12! x.com/jimd_editors/s…
In the our most popular podcast of 2023, Dr @FroeseLab is joined by @TheYueLab to discuss cobalamin, crystallography and consuming raw liver. Soundcloud: soundcloud.com/user-109006120… Audible: audible.co.uk/pd/The-complex… Or search for Complex cobalamin wherever you listen #JIMDpodcasts
Low protein cake box by Eleanor Speed - so fabulous!
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