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
ID: 837043673347026945
https://linktr.ee/hcuna 01-03-2017 20:55:38
3,3K Tweet
709 Followers
960 Following
Natasha B.
@nat_bonhomme
Putting families at the center of health- Founder @ExpectHealthOrg - Dir. @BabysFirstTest_ #maternalhealth #BlackInGenetics Travel and Patio time 🙌🏾 🇭🇹
University of Colorado
@cusystem
Colorado's premier university system. Four campuses — Boulder, Colorado Springs, Denver and the CU Anschutz Medical Campus — each making a difference.
Anna C.E. Hurst, MD
@acedens
Diagnosing rare disease with genomes, dysmorphology & coffee. MD Geneticist at Univ. of AL at Bham. Genetics residency PD. Tweets are my own. She/her
UTEP
@utep
The University of Texas at El Paso is America’s leading Hispanic-serving university. ⛏ utepn.ws/community_poli…
Amy Gaviglio
@agavig
Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
PABLO SILVA
@pablonutsocial
BÚSQUEDA DE LA REAL PROSPERIDAD SOCIAL. ESTUDIANDO LA ELIMINACION DE LA POBREZA. NUTRICIONISTA SOCIAL, ESPECIALISTA EN GERENCIA DE LA SEGURIDAD SOCIAL.
James Nurse
@drjnurse
Father. Consultant paediatrician. Hockey player. Interested in IMD and Medical Education. Social Media editor at @JIMD_Editors
Nephi Walton
@geneticks
Clinical Geneticist, Bioinformaticist, Recovering Programmer, Writer, Science Lover, Collector of Anatomical Oddities, Nerd, Dad, @NIH, Opinions are my own
Dr Sudhir Kumar MD DM
@hyderabaddoctor
Neurologist, Apollo Hospitals, Hyderabad/ Running, Fitness, Equity/ On a mission to prevent people from becoming patients/ Online consultation: Apollo 24/7 app
Rafael A Pacheco Orozco
@rapachecoo
Medical geneticist🧬 Interests include: Inborn errors of metabolism Hereditary Connective Tissue disorders
Organic Acidemia Asn
@organicacidemia
The Organic Acidemia Assn, our mission is to support families, share awareness of organic acid disorders, fund research for better treatments & advocate NBS.
Walter Jr. Boim de Araujo
@walter_boim
MSc PhD RVT RPVI ABVM. Board Certified - American Board of Vascular and Endovascular Medicine @SVM_tweets. Program Director for Endovascular Residency at @UFPR.
CureCHM
@curechm
The Choroideremia Research Foundation supports research, education, and advocacy regarding CHM, a hereditary retinal-degenerative disease that causes blindness.
Louise Lamaris 💙
@loulamaris
REPs qualified #ExerciseToMusic #Fitness Instructor and Personal Trainer 🏋️♂️🤸 Marketing Specialist, Mum, #Runner and #PKU adult.
Guillem PintosMorell
@gpintosmorell
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Pedro Lendinez #EnfermedadesRaras #MasVisibles
@pelendinez
#EnfermedadesRaras #MasVisibles. ¿Te sumas? ¡Juntos llegaremos más lejos! Opiniones personales.
Matt Tschirgi, CGC
@matt_tschirgi
Genetic counselor, #entrepreneur, #adoptive dad, consultant, UTHSC-H. Opinions belong to me and my #DNA. #GoCougs! #GeneChat #NerdGang
Albert Vilella
@albertvilella
Next-Generation Sequencing, Single-Cell and Spatial Biology, Next-Generation Proteomics, Synthetic Biology, Liquid Biopsy, Accelerated Compute in Biotech.
Louise Robertson
@louisedietitian
Dietitian 💁🏻Specialising in Inherited Metabolic Disorders🍴Dietitian for @galactosaemia 🍎Nutrition blogger 💻 Tweeting own views.
NSPKU
@nspku
The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see nspku.org
Anita MacDonald
@macdonj
All tweets discuss low protein foods to help children on low protein diets. All views are my own.
RarasNoInvisibles
@noinvisibles
Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
Sagar Bechum|ಸಾಗರ್ ಬೆಚುಮ್🇮🇳
@tauriansb
Proud Bharathiya🇮🇳 || Taurian || Nationalist || Patriot || Educator at Panchajanya Academy & Center for Excellence(PACE)
Dr Joshua Walinjom
@walinjom
#Cardiology Fellowship @ #Kings #College #London, #Cardiologist @ FMSB-UY1, 🩶 #Interventionnal #Cardiology #Christian #Jesus is #Lord
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Papadimitriou D. Stergios
@stergpapad
Hematologist
Jennifer McKenzie
@mcjenziephd
Chemist working in Clinical Laboratories and Public Health// Treasurer for Nashville LS of the ACS// she/her // posts my own
ScarletWitch
@annboleyn08
“We speak not only to tell other people what we think, but to tell ourselves what we think. Speech is a part of thought.”
Dra A. García-Cazorla
@agarciacazorla
Child Neurologist and Researcher Neurometabolism-Synaptic Metabolism Lab. Director of Research in #Neuropediatrics @SJDbarcelona_es Prof at UB. Tweets my own
Rahul Dhanda
@rahulkdhanda
Co-founder, President, CEO at @syntisbio, Co- founder/Founding CEO @Sherlock_Bio, Co-founder BLASTID, tweets my own. @dhanda.bsky.social
Anita Quintana and the Quintana Lab
@anitaquintana20
Nico Gagelmann
@nicogagelmann
Hematology. Medicine. Science. Train. Think. Implement an integral actuality.
Kushol Gupta
@guptapenn
Research Assistant Professor of Biochemistry and Biophysics | Univ of PA | he/him Find me at @guptapenn.bsky.social
Maria Quelhas
@quelhas_maria
Diego Saldaña Peñaloza
@diegosaldaa1
Médico genetista
StudyRare 🧬
@studyrare
Board prep 4 @GeneticCouns students & @TheABMGG fellows. Led by clinical geneticist @dpique12 Monthly 📧 w/ board-style q's at studyrare.com
Sylvia Radenkovic
@radenkovic_s
Clinical lab geneticist in training @UMCUtrecht. Chair @EMN_MetSoc @FemalesInMS. Alumni @vib_ccb @KU_Leuven @DKFZ @MayoClinic Stem-cell & metabolism fangirl🧠🫀
Alvaro Hermida
@info_rares
Specialist on Metabolic Diseases and always looking on the bright side of life.
AECOM&Sociedad
@aecomysociedad
Grupo de trabajo 📚 de la Asociación Española para el Estudio de los Errores Congénitos del Metabolismo aecom.com.es 🧬🩺#ErroresInnatosdelMetabolismo
Oxford-Harrington Rare Disease Centre
@ohraredisease
Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
ACIMET | Asociación Acidemia Metilmalónica
@acimet_mma
Asociación de afectados y familiares con acidemia metilmalonica. #Enfermedadrara #metabólica #genética 🧬. 1/60.000 nacidos 👶 48 casos. 🗺️worldmmap.com
Geraldo Barbosa
@geraldorbarbosa
Médico neuropediatra
Syntis
@syntisbio
Creating a New Class of Therapy
Bengu Arslan
@benguarslan9
çocuk metabolizma hastalıkları pediatrics. inherited metabolic diseases
_B4rna_
@bruhnabas1
just a slilly femboy who loves to cuddle :3
KC Red or Dead
@seaskyoutdoors
Family, Author, Fitness, Outdoorsman, Inappropriate Memes, Fighter Not a Lover, Kansas City Chiefs, #ChiefsKingdom
AECOM, Asociación Española para estudio de los ECM
@aecom_eim
AECOM. Asociación Española para el estudio de los Errores Congénitos del Metabolismo. 🩺🧬Integrada en la Sociedad Europea de EIM (SSIEM)
Lauren Dwyer MPH, MBA, RD
@dwyer_lauren_
rare disease patient advocate metabolic dietitian - nephrology medical science liaison - Travere
flok
@flokhealth
Redefining clinical care and research priorities in metabolic health through the power of patient data.
JNAMA
@mrdnamd
rareparenting
@rareparenting
Mom-created resource for parents of children with #disabilities, #rarediseases and #specialneeds
Jack C. Drda (He/Him)
@jackcdrda
MD/PhD trainee: autoinflammation, immunometabolism, mass spec, biochem, lipids, & liver❤️. Spread kindness: we’re all colleagues @MSPA_NATIONAL🏳️🌈
Megadonion
@megadonion
Christian. Entrepreneur. Someone who always lives on the edge. Rare disease advocate. Founder of rare disease advocacy organization. MAGA FIGHTER!!!
Reza Rafieossadat, MD
@insulacastaway
Wandering my life's gyri and sulci | #IMG Aspiring #NeurosurgeryResident 🧠; #Match2025 participant ; AAMC ID: 16113664 | @ManUtd fan | Forever repping Shiraz
[email protected]
@psguthrie36030
Coughlin Lab
@coughlin_lab
A translational research lab whose mission is to improve the lives of individuals with inborn errors of metabolism.
Eamon McCarron
@eamonpmccarron
Doctor. Chemical Pathology/Metabolic Medicine. Inherited Metabolic Disorders & Lipidology. Classical Musician. Alumnus @LivUniMedicine @liu_universitet
Solace Nutrition
@solacenutrition
Safe, reliable, and effective nutrition formulas that help individuals with unique metabolic nutritional needs and chronic diseases.
Dr Albert Jones
@dralbertjonesau
A retired psychiatrist, writer, editor, content curator
Charles Marques Lourenço
@charleslourenco
Clinical Geneticist Neurogenetics and Hereditary Metabolic Disorders Specialist
Rareatives
@rareatives
Share Your Rare | Amplifying Rare Disease Voices 🎙️ 📖 Sharing stories from the 1 in 10 🧬 New patient-led publication #RareDisease #PatientVoicesMatter
Rare Connection Inc
@rare_connection
Rare Connection is a non-profit orginization. Our mission is to connect rare disease patients, educate medical professionals and find clinical trials.
The Journal of Inherited Metabolic Disease
@jimd_editors
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.
Elena D
@elenadf75
Atareada. Endocrinología y Nutrición. Dedicada a lo raro #TCA Errores innatos metabolismo #Hipófisis. Tutora #MIR con ilusión @EndocrinoHUVR @HospitalUVRocio
Empowered Advocacy
@empoweredadvo
Martine R.
@romromtin
Herboriste/Criminologe *B12 deficiënt(TCNII) sinds 2000, nooit goed behandeld. *PlantenprotocoL COVID-19 en long covid stephenharrodbuhner.com
Bernadette Sheehan Gilroy
@sheehangilroy
Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
Yang Hou
@yanghou3
Director @FSUDEaRLab, Assi Prof #FSUCOM , PhD #UTAustin. Postdoc #NIH developmental, clinical, quantitative psychology, mental health, rare disease
Familias GA
@ga1familia
Asociación sin ánimo de lucro de familiares, amigos y pacientes con Aciduria glutárica tipo I y 2