NSPKU
@nspku
The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see nspku.org
ID: 1371836238
http://www.nspku.org 22-04-2013 10:57:40
56,56K Tweet
3,3K Followers
1,1K Following
Pauline O'Connor
@poconnor
Author & Advocate. Subscribe for updates, as not here often. Books #TheRedHatStories #LivingWithPKU #LivingWithMildBrainInjury #RareDisease #BrainInjury #PKU
Chris Riches
@chrismriches
@Daily_Express NW Correspondent, CF & PKU Campaigner, 2019 British Press Awards๐& 2020 British Journalism Awards Campaign Journalist of the Year ๐. โค๏ธSpurs
Alison McGovern
@alison_mcgovern
Labour MP for Birkenhead / progressive / please email [email protected]
Carla Lockhart MP
@carlalockhart
Member of Parliament for Upper Bann #deliveringforyou contact:- [email protected] or my office 02838 310088
Diane Coyle
@dianecoyle1859
The Enlightened Economist. Bennett Professor of Public Policy, University of Cambridge. Also @dianecoyle1859.bsky.social
PTC Therapeutics
@ptcbio
PTC is a patient-centered biopharmaceutical company focused on discovering, developing & commercializing medicine for patients with rare disease
Stratech Scientific
@stratech_uk
We supply premium lifescience reagents for your research requirements ๐ฆ ๐งฌ๐งช And for every order received a tree is planted๐ณ๐ฑ [email protected]
British Dietetic Association
@bda_dietitians
The professional association & trade union for UK dietitians. The UK's largest organisation of food & nutrition professionals. Press enquiries: 0121 200 8018
Partha S Kar ๐ฎ๐ณ๐ฌ๐ง๐๐ฅ
@parthaskar
Type 1 Diabetes & Technology Lead @NHSEngland @NHSGIRFT Consultant Diabetes, Portsmouth IMG- From Kolkata ๐ฎ๐ณ Rest? Click link Motto: Dance lightly with life
James Nurse
@drjnurse
Father. Consultant paediatrician. Hockey player. Interested in IMD and Medical Education. Social Media editor at @JIMD_Editors
Marwan Shinawi, M.D.
@marshinawi
I am a clinical genetics and genomics specialist. I enjoy arts and photography. Also have interest in human rights and (some) politics. Opinions my own.
Clair W ๐งก
@clairbear42
Ginger #PKU Adult & Mumma. She/Her. Blogger.๐ฉโ๐ป๐ Expert on films, ice cream, cats and tea. ๐ฎ๐#ADHD ๐ณ๏ธโ๐
Dr Lewis Gough
@lewisgough
Researcher with industry and world class sporting organisations | Associate Professor @mybcu | College Academic Lead for Research | nutrition and physiology ๐
SWAN UK (syndromes without a name)
@swan_uk
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
Cornwall Museum and Art Gallery
@cornwall_museum
Discover Cornish art, culture, nature and history here in the heart of Truro. ๐จ๐๏ธ Open 10am - 4pm every day.
Susan Price (she/her)
@susanpricerd
Chair @BDA_Dietitians Associate Director/AHP/Dietitian @uhbtrust #ElsieWiddowsonLecture ๐ด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ๐ง๐ง๐ฌ๐ง๐ณ๏ธโ๐๐ณ๏ธโโง๏ธ๐๐
Kate Learoyd
@pkufamily
Mum, charity trustee, ask awkward questions, trying to cope with this icky platform: support @NSPKU for better future for #RareDisease #pku, tweeting own views
Joyce Harper
@profjoyceharper
Author, Podcaster, Public Speaker, Professor. Empowering women to have good health and happiness #yourfertileyears.
NHS England Workforce, Training and Education
@nhse_wte
We are now part of the new NHS England. Account managed 8:30 โ 17:00
NPKUA
@npkua_info
The mission of the National PKU Alliance is to improve the lives of individuals with PKU and pursue a cure.
DrDoctor
@wearedrdoctor
We build digital solutions to increase capacity in the NHS and improve communication between patients and hospitals. ๐ฑ ๐ฉบ #BreakingTheBacklog #HealthTech #NHS
Metabolomics Society
@metabolomicssoc
The Twitter account of the international #Metabolomics Society with the mission to promote and develop the field of metabolomics. RT is not endorsement.
Nualtra
@nualtra
Medical Nutrition with the goal of delivering great-tasting, affordable Oral Nutritional Supplements ๐ช - Serving suggestions only -
Dr. Mike Todorovic ๐ง
@drmiketodorovic
| Associate Professor of Physiology @BondUniversity Medical School | ๐ Director of Dr Matt & Dr Mikeโs Medical Education | YouTuber ๐บ | Podcaster ๐๏ธ
Louise Robertson
@louisedietitian
Dietitian ๐๐ปSpecialising in Inherited Metabolic Disorders๐ดDietitian for @galactosaemia ๐Nutrition blogger ๐ป Tweeting own views.
Dan Wuori
@danwuori
Dan Wuori, Ph.D. | Author, The Daycare Myth: What We Get Wrong About Early Care and Education (and What We Should Do About It) available now from @TCPress
Alana Christie
@alanaalanat
Paediatrician with an interest in IMD ๐งฌ and Diabetes, Mum, runner, hiker, avid reader, part-time island hopper and full-time Potterhead โก๏ธ. All views my own.
Anita MacDonald
@macdonj
All tweets discuss low protein foods to help children on low protein diets. All views are my own.
Promin Metabolics
@prominmetabolic
Family run company supplying low protein foods and meal solutions for people with #PKU
Aisling Pigott ๐ด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ๐ฎ๐ช
@dietitianwales
Dietitian. Lecturer. Ultra-marathon enthusiast. @RCBCWales PHD fellow. Dysgu Cymraeg. BDA media spokesperson of the year 2020. TEDXNHS speaker
Chloรซ Ormerod
@ormerodchloe
European Society of Human Genetics (ESHG)
@eshgsociety
brent richards
@brentrichards19
I'm a doctor and scientist trying to use human genetics to help my patients.
ESPKU
@official_espku
Official Account of the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria
Low Protein Connect
@lowproconnect
Providing delicious recipes, education, great services and inspiration to support people with metabolic conditions. #FINDYOURPHENOMENAL
Patrick Grady
@gradysnp
member of the public in north glasgow
Jessica Brown
@jess_brown10
PKU News
@howmuchphe
National PKU News provides support & resources to the PKU community. Phenylketonuria (PKU) is a rare genetic metabolic disorder that requires a low-protein diet
James Fasham
@jamesfasham
๐งฌ๐จโโ๏ธAcademic Consultant in Clinical Genetics ๐ฌ Social media chair: @ESHGsociety. ๐ค @DiseaseGenes bot creator #Genetics #Genomics #RareDisease
Victoria
@amieiro8
Emily Clarke (she/her) ๐งฌ๐ฆฎ
@talkinggenes
Registered Genetic Counsellor @GenePeopleUK. working in the voluntary sector to support the Genetic community. @theAGNC EDI Sub-committee member.
dazzle4rare
@dazzle4rare
Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our ๐ linktr.ee/dazzle4rare
Andrew K
@a_i_k_63
It's not your belief that makes you who you are, but how you behave.๐บ๐ฆ
Briony Hill
@brionyhill5
Research Fellow in preconception, pregnancy and postpartum health - lifestyle, behaviour change, and psychosocial wellbeing.
AstonPsychology
@astonpsychology
Official account for School of Psychology at Aston University, Birmingham, UK Research news, psychology-based info & miscellanea @AstonUniversity #TeamAston
SAshley-Maguire RD
@sashleymaguire
She/Her. Workforce Transformation NHS England SW. Registered Dietitian. Maternal health. AHPQI Core Team. #SWAHPQI @AHPsEverywhere. Views are my own.
Aybara19
@aybaranineteen
StudyRare ๐งฌ
@studyrare
Board prep 4 @GeneticCouns students & @TheABMGG fellows. Led by clinical geneticist @dpique12 Monthly ๐ง w/ board-style q's at studyrare.com
Alvaro Hermida
@info_rares
Specialist on Metabolic Diseases and always looking on the bright side of life.
Jessica Priestley, MD PhD
@mommasaurusjess
Medical & Biochemical Geneticist. Invested in delivering high-value care to patients and families with rare disease. Momma bear and lover of ๐ฆ๐ท๐ง
pious gandhi
@gandhipious
Indie Author Mastermind
@indiemastermind
Helping indie authors build a sustainable career from their writing. With actionable tips, proven strategies, and real-world advice. Now on Substack.
G_ O'D
@gav0donnell
Senior Treasury Accountant with @Zurich Chair of @PKU_Ireland #PKU Patient
Annabelle Skidmore
@annieskidmore2
PhD student @ BCU ๐ Health Advisor @ BUPA, PKU patient ๐ฑ
Demi-leigh
@demileighnhs
Mental Health // NHS account. Opinions are my own. ๐ด๓ ง๓ ข๓ ฅ๓ ฎ๓ ง๓ ฟ๐ฎ๐ช๐ด๓ ง๓ ข๓ ณ๓ ฃ๓ ด๓ ฟ๐ฎ๐น
SSIEM
@ssiem2023
Discover insights in neurometabolism, therapeutic advances, Mitochondrial Disorders, and more at SSIEM 2023.
Iman Ali
@iman99ia
..
Aoife Murphy
@aoifemurphy40
Solicitor. โ Ex Cabin Crew. ๐Iarlaithโs Mam - our PKU Hero. ๐ #grateful Instagram: aoife_ni_mhurchu All views are my own.
SSIEM 2024 Annual Symposium
@ssiem2024_porto
Organised by the Society for the Study of Inborn Errors of Metabolism, it is a much-anticipated meeting of experts, and distinguished professionals.
Robyn Fairley
@robynmfairley
Vitaflo Key Account Manager - North of England & PKU Parent ๐ฟ
๐ธ๐๐๐ฉ๐๐ค ๐๐๐ฃ๐ฅ๐๐
@mrs_martin_2012
Wife, mum to an 16 year old with phenylketonuria (PKU), new dog mum, ELCE in Clacks
#WOMENSART
@womensart1
Celebrating โ's art & creativity, curated by author & art historian @PL_Henderson1 Images ยฉ to respective owners instagram.com/womensart1/ @womensart1
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. Endocrinologรญa y Nutriciรณn. Dedicada a lo raro #TCA Errores innatos metabolismo #Hipรณfisis. Tutora #MIR con ilusiรณn @EndocrinoHUVR @HospitalUVRocio
Nusrat Kausar ๐ค๐
@nusratkrd
Dietitian โข Clinical Director @PrimarycareFCD โข Director @Nutribytes_ltd โข Committee Member PCOC @DiabetesUK โข Member @BDA_SENdiabetes
TEDxNHS ๐
@tedxnhs
Licensed #TEDx for the NHS, by the NHS. All talks available at tedxnhs.com and TEDx @YouTube.
Bernadette Sheehan Gilroy
@sheehangilroy
Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Nรญ neart go cur le chรฉile" The views and opinions expressed here are solely my own
MyNutriWeb
@mynutriweb
Award-winning elearning & networking hub on nutrition for professional competence. Sharing knowledge & expertise from science to practice.
Rare Advocacy Movement
@rareadvocacy
Network of people with #RareDisease #LivedExperiences dedicated to evolving the #LivingRare experience into opportunities for the global community to thrive.
Caroline Graham
@carolinepku
Mum, Designer, Artist, NSPKU volunteer, 3 kids 2 with #PKU all views my own