Toni A Mathieson
@toniNPUK
CEO @NiemannPickUK, wife, mother of three NPC angels, friend and rare disease patient advocate
ID:414705247
17-11-2011 11:35:30
209 Tweets
208 Followers
385 Following
ひな
@lgass16474243
Jordan
@JordanAMitchell
Father of @Life4Liam diagnosed with Niemann Pick Type-C. Fighting for a Cure. Donate at https://t.co/SnRHW69A0vCambridge Rare Disease Network (CamRARE)
@camraredisease
Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iwFatih
@fatiherturk0
Antonio Ochoa
@afocoa
Hospital Pharmacist. I am still trying to figure out many things, including my views, so take them with a pinch of salt or two; three probably not good for youJay Honsinger
@HonsingerJay
Parseghian Fund
@Parseghianfund
The Ara Parseghian Medical Research Fund is a non-profit organization dedicated to funding medical research projects to find a treatment for NP-C disease.Mugisha Sam
@mugishasami1
Polysophist, Project manager, Fellow in M&E, Administrator and Advocate for Human RightsPatient Worthy
@PatientWorthy
We're a resource for engaging, informative content and rare patient news, well done.Save Our Medicine
@dontgiveuponnpc
NPC is a neurodegenerative disease and every moment counts. @FDA please do not take away access to the medicines we need to survive and thrive. #saveourmedicineElizabeth DAVENPORT @ Rare Advocate Consultancy
@Elizabe86104691
I have worked in the charity sector for over 20 years. I have given non- clinical advice & guidance for people with rare and complex needs.Rami A. Ballout, MD (#TheColorfulPediatrician 🌈)
@RABallout
PGY-2 @UTSWPedsRes. Former post-doc @NIH_NHLBI & @TheBethesdaLabs. A budding peds-geneticist interested in all things #cholesterol, #metabolism and #chromatin.Cathy Abbott
@CathyAbbottLab
Professor, eEF1A2/neurological disorders. Tweeting about research, EDI, 3Rs (AWERB chair). She/her, views own. @cathyabbott.bsky.socialInspire
@InspireIsHealth
Inspire is the largest online health community working w/healthcare industry to provide vital insights about patient experience to enable medical breakthroughs.Dimila Michael
@DimilaMichael
Social worker, Business manGareth Presch
@GarethPresch
Everyday is a school day! CEO - Founder, World Health Innovation Summit @WHIS2020 #WHISSharonBarbourBBC
@SharonBarbour
BBC Health Correspondent, Producer & Presenter. Royal Television Society Journalist of the Year. Producer/Director: The Wahine DisasterCarl Burdon
@carlhenry01
Hard working electrician.... Also lead singer in a band and as part of Duo. Fundraiser.fco.javier
@solojavier75
Ian Keary
@ian_keary
Science and bike-loving geek. Enjoy a beer.Dr Sondra Butterworth. Community Psychologist
@SondraB_RareQoL
Keynote Speaker, Mixed methods researcher, EDI consultant and facilitator. RareQoL and EDIRA- Equality Diversity Inclusive Research Association Founder.Finding that elusive diagnosis expeditiously.
@RareDiseaseDxRx
RareMDx contains 6964 signs/symptoms with descriptive characteristics. Physicians' selection of S/S expedites DDx process for 3754 different rare diseases.AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀North Western Mental Health
@NWMentalHealth
We provide community & specialist mental health services in the NorthWest of Melbourne. Statewide specialist Neuropsychiatry Service @RMHSimona Biondi
@simobi73
Head of Marketing at Orphazyme A/SKidscape
@Kidscape
We’re here to help children, families, carers and practitioners with advice, training and practical tools to prevent bullying and protect lives.SamebutDifferent
@SBDRareProject
Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.Claire Fyvie
@FyvieClaire
Niemann-Pick C; mental health; trauma; NHS; Scottish Government. Views my own.James Doyle
@JamesJDoyle
PhD-turned-Entrepreneur | Life Sciences Innovator | Startup BuilderBreaking Down Barriers
@BarriersDown
BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.Vicky
@Vicky52182147
DrPasEle
@DrPas84Ele
Communication Advocacy Policy | #Neuroscience #PhD | Communication Manager at @ern_reconnet | Founder n President of @RareSpecialPowers | #pinksocks | Own viewsCheryl Em
@cheryl_hannah10
AdvocacyRSS 🇺🇲
@advocacyrss
Heather #RareDisease Advocate / Writer/ networking / president / Exec Producer #highstrungmovie / #WritingCommunity no DMs unless requestedAlice Dupont
@AliceDupontJuhl
Jarrod
@derelictfrog
CENTOGENE
@Centogene
The essential biodata life science partner for rare and neurodegenerative diseasesDaniel de Vicente
@Danidevic
Farmacéutico. Consultor sanitario. Presidente ASMD España @Asmdspain Vocal JD @FEDER_ONG BoD @Eurordis #ASMD #EnfermedadesRarasJohn Viel
@tbooted1
father of 3 teenagers. husband. interested in cool science. tweets are my ownClinical Trials Australia Online
@TrialsAustralia
Clinical Trails Australia Online platform helps healthy volunteers & those with conditions find clinical studies. We also help recruit for trial managers.Rafael A. Badell-Grau, PhD
@rafaelabadell
Medical scientist 👨🔬 | Family 👨👩👧👧 | Lysosomal disease research🔬 | Gene therapy 🧬 | Drug development | Biotech 🧪💉| Finance 📈| Learning 📚| 🇻🇪Asociación ASMD España
@AsmdSpain
Asociación española de pacientes de ASMD. Deficit de Esfingomielinasa Acida (Niemann-Pick B, A, A/B). #ASMD #NiemannPick #EnfermedadesRaras #lisosomalesBDFA
@BattenDiseaseuk
Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure.adriana
@DaileyPato
Great love 💗Nfally Sanyang
@NfallySanyang1
Why are we sufferingKari Ezell
@kari_ezell
I'm a stay at home mother to 2 amazing kids and my angel baby, Corbin who passed at the age of 2. I'm just a simple, easy going person really. ❤Isobel Platt
@issi_platt
Doctor in London | Psychiatry Lead for Mind The Bleep | Botanical Obsessional 🌿| UCL GradThomaz Gibble
@GibbleThomaz
Veterinarian Doctor Father Of A Grown Married Daughter,Widower From Oslo In Norway.IFOPA
@ifopa
Fund research to find a cure for FOP while supporting individuals and families through education, public awareness and advocacy.Bendrigg Trust Accessible Outdoor Centre, Cumbria
@BendriggTrust
Changing Lives Through Accessible Adventure! Registered Charity & Leading Specialist Outdoor Centre For People Of All Abilities. 📍 Kendal, Cumbria