Pauline O'Connor @poconnor
Author & Advocate. Subscribe for updates, as not here often. Books #TheRedHatStories #LivingWithPKU #LivingWithMildBrainInjury #RareDisease #BrainInjury #PKU pigpen.page UK Joined January 2008-
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🚨 Mid-year sale Save 20% on your copy of "Living with Mild Brain Injury" This 'incredibly vivid' memoir is an essential resource for those navigating life with brain injury ⭐⭐⭐⭐⭐ "A brilliantly written, and emotional narrative" #TBI #Concussion buff.ly/3L6TYus
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Celebrating #PKUDay2024 with: 1️⃣ A spotlight on research, and clinical trials in the #UK, which you can support now! 2️⃣ A sale all weekend! 20% off Living With #PKU ebook 🚨 UK & US readers can buy direct via Shopify link in bio #LivingWithPKU #raredisease #PCU #LowProtein
Report from the 2024 @nspku #Conference on the review of the #EU Guidelines for #PKU This session touched on #PheLevels, #NewTreatments, #NewbornScreening, #Cost of PKU, and much more! buff.ly/4byUGfD #LivingWithPKU #RareDisease #phenylketonuria #PCU #NSPKUConference
Pauline O'Connor retweeted
#pku Community Pls use online info for protein content for No Chick Kievs - pack-side info is wrong One kiev is 5.5 #pku exchanges (not 2 or 2 g protein as packaging) @NoMeatLtd @IcelandFoods pls rectify asap - wrong protein info is dangerous to those on medical low protein diet
Anyone with experience of #Sapropterin in the #UK, please fill this in! #LivingWithPKU #PKU #PKUAdult #lowProtein
@mariainesgama @NSPKU Thank you! It was lovely to meet you and am thrilled to find another copy 'in the wild'!
One week until the @NSPKU Conference, I look forward to seeing you all there :) #PKU #LivingWithPKU #LowProtein #LowPhe #NSPKU2024
Last Chance! The Red Hat Stories Kickstarter ends tomorrow. Fully funded, so it will be published. Grab your copy, link in bio #theredhatstories #shortstory #anthology #shortstorywriter #kickstarter #newbook #bookstagram #author #london #londonlife #londoncity #london #londonlove
@sheehangilroy Morning, is this for Irish PKU folk only, or worldwide?
Please support #TheRedHatStories Kickstarter! This is my first foray into fiction, though I began writing The Red Hat Stories in 2006. Please help ensure these stories are published. Pledges will start at £1. #NewBook #ShortStory #Authors #AmWriting buff.ly/4ciAXBD
PKU-Friendly Chocolate, cherry & sour cream cupcakes incoming… #PKU #LivingWithPKU #LowProtein #baking
An #anthology of #ShortStories set on #London public transport. @transportforlondon know anyone who might be interested in the London transport system😉 #kickstarter coming soon Pigpen.start.page #theredhatstories #theredhat #theredhatsociety #newBook #author #crowdfunding
@ClairBear42 Huge congratulations! That is amazing.
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
Kate Learoyd @PKUFamily
1K Followers 1K Following Mum, charity trustee, ask awkward questions, trying to cope with this icky platform: support @NSPKU for better future for #RareDisease #pku, tweeting own views
Anita MacDonald @macdonj
2K Followers 633 Following All tweets discuss low protein foods to help children on low protein diets. All views are my own.
Clair W 🧡 @ClairBear42
645 Followers 813 Following Ginger #PKU Adult & Mumma. She/Her. Blogger.👩💻🍓 Expert on films, ice cream, cats and tea. 🎮🌜#ADHD 🏳️🌈
Bernadette Sheehan Gi... @sheehangilroy
1K Followers 5K Following Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
Chloë Ormerod @OrmerodChloe
377 Followers 219 Following
𝔸𝕝𝕖𝕩𝕚�... @mrs_martin_2012
289 Followers 301 Following Wife, mum to an 16 year old with phenylketonuria (PKU), new dog mum, ELCE in Clacks
Promin Metabolics @ProminMetabolic
1K Followers 168 Following Family run company supplying low protein foods and meal solutions for people with #PKU
Jessica Brown @jess_brown10
270 Followers 290 Following
Caroline Graham @CarolinePKU
405 Followers 641 Following Mum, Designer, Artist, NSPKU volunteer, 3 kids 2 with #PKU all views my own
Małgorzata Henek @ma_henek
383 Followers 553 Following Secretary of ESPKU. PKU Patient & Advocate. Wspieram chorych na Fenyloketonurię. Interesuję się zdrowiem i polityką społeczną. Loves: ski jumping + 📖 🎶📺🚗✈
Duncan Noble-Nesbitt @DNobleNesbitt
278 Followers 193 Following Specialist Nurse, tenor, travel loving, new experience, answer seeking type of guy. Lifelong PKU experience and on treatment #PKU #RareDisease Own views Tweeted
Charlotte Westwood @charlmarx89
214 Followers 336 Following Leftie, mother, cat lover, dysgwr Cymraeg 🏴 and U9s girls ⚽ coach. Views are absolutely my own.
Paul McKellar @mckellar_paul
587 Followers 406 Following English Literature (BA Hons) Graduate 2021. Support Worker. PKU Warrior. Trialist of anything.
HCU Network America @HCUAmerica
720 Followers 949 Following The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica
Low Protein Connect @LowProConnect
1K Followers 384 Following Providing delicious recipes, education, great services and inspiration to support people with metabolic conditions. #FINDYOURPHENOMENAL
Mgt Lappin @MargaretLappin
245 Followers 513 Following Mum to an amazing 23 year old who is my daughter, my best friend and my star 🌟 #true love
PKUhub @PKUhub
1K Followers 437 Following PKUhub... The virtual meeting point for PKU's...such a big part of a small number of peoples' lives...Est'd 2004. It's all in our genes! 🧬
Shibley @dr_shibley
27K Followers 20K Following #physician #dementia #delirium #disabled Honorary Visiting Professor, School of Law and Social Justice NHS practitioner health Personal views only
Trisha Elliott @Trisha_the_doc
16K Followers 11K Following Interested in life in general and people in particular...
Mandoza Jordan @MandozaJordan
3 Followers 69 Following Always make sure the people around you are happy, because everyone deserves to be happy with you.🥰😍😘
Sandra Bullock Annett... @OdumGrace86434
80 Followers 1K Following Official interaction account with(CEO) Sandra Bullock@ Real https://t.co/ZvAtJql9Rj... Director, producer, comics author, writer, distributor, model 📽🎬📸📹
Martin Brooker @MartinBroo60968
49 Followers 279 Following
Kealan Lennon @kealanlennon
1K Followers 2K Following CleverCards Founder & CEO. Money reinvented! Send. Receive. Pay. Instantly.
Malcolm Fernando @Fernando011257
122 Followers 365 Following Real Estate management 💼 Civil Engineer 👷♂️🚧
Dorothy Allison @allison_do13155
272 Followers 1K Following Dorothy Allison author Bastard out of Carolina,cavedweller, Two or Three Things I know for sure.
M.J.R @lunsfordjunior
49 Followers 1K Following 🇺🇸| FLstate Mia| 10•10•18 🧒💕 🌟💙❤️🤍🌟 Carlino daddy👨👧💗| GOD BLESS U.S ARMY 🪖🇺🇸
Claire Evans @EvansClair25197
0 Followers 16 Following
David Fejfar @DavidFejfarPKU
9 Followers 189 Following
Lisa Mc Mahon @LisaMcM61685623
1 Followers 21 Following
Yusuf, MBA @Up____Lift
11K Followers 9K Following Helped 100+ founders build Investor-ready pitch decks, business plans, financial model & grant proposals | Pitch reviewer @TechCrunch @TechCabal @Crunchbase
Nicola Casement @nicola_casement
35 Followers 155 Following PKU Adult, Veterinary Nurse, Married, Mum of 2
Stuart Sumner @StuartSumner15
1 Followers 15 Following
Ｍａｒｋ Ａ. Ｋ... @Making_Fiction
4K Followers 3K Following #FlashDogs ambassador | #vss365 founder | @Cambridge_Uni Creative Writing | UEA MA Crime grad | PhD creative project at @angliaruskin (see link for details)
DEKU 🇧🇷🇧🇷 @kehdi_de99325
69 Followers 896 Following
Christopher Cassidy @chrisk_1986
17 Followers 47 Following
Lauren kurtz @Laureen_kt
76 Followers 421 Following "Fueling book success! 🚀 Marketing strategist for authors. 📚 Crafting campaigns, building brands, and driving sales. Let's make your story a bestseller! #Book
Erin L-S 🎵🩺 @Dr_ErinLS
1K Followers 1K Following Dr🩺 Classical musician 🎵 Dog mum 🐶 neurodiversity 🌈 You can't buy friends...unless you have cake. Then you definitely can. 🧁 Views my own
Aoife Murphy @AoifeMurphy40
66 Followers 470 Following Solicitor. ⚖ Ex Cabin Crew. 💄Iarlaith’s Mam - our PKU Hero. 💙 #grateful Instagram: aoife_ni_mhurchu All views are my own.
Twitacct001 Twitacct0... @twitacct0065939
5 Followers 409 Following
Loz @LdLoz
3K Followers 4K Following Our reading adventure. A mum of 2 sharing a passion. And a love of coffee. #ReadYourOwnHeightChallenge finished 🎊🎊 Book Blogger and Rugby mom 🏉
Gooselil @Otwitrdumpstr
156 Followers 678 Following
Kaleroot @kale_root
421 Followers 1K Following Book Editor, Blog Contributor and Book Enthusiast | First Deaf Literary Agent #ebook #ebookmarketing #formatting #contentwriting #amazonmarketing #publication
sandra newton @sandysurely
2 Followers 73 Following
NigelAlghamdi @AlghamdiNi24580
48 Followers 2K Following
sandra giffen @GiffenSandra
0 Followers 23 Following
Qais Sadieh @qais_sadieh
1K Followers 3K Following 🙏يا قاسم الجبارين،،. يا ناصر المستضعفين 🙏 #Zionists are pure Nazi Evil
Sajid Hassan @SajidMscp
96 Followers 834 Following Research assistant at Henan University 🇨🇳 school of Nursing. Clinical Neurosychology. [email protected]
Indie Author Mastermi... @indiemastermind
472 Followers 2K Following Helping indie authors build a sustainable career from their writing. With actionable tips, proven strategies, and real-world advice. Now on Substack.
chris_warren @Sammy_2967
59 Followers 625 Following I'm single looking for a woman to spend the rest of my life with
G_ O'D @Gav0Donnell
24 Followers 29 Following Senior Treasury Accountant with @Zurich Chair of @PKU_Ireland #PKU Patient
ken madrick @kenmadrick04
6 Followers 66 Following CIVIL ENGINEER Dad of one ♥️🥰♥️ very cool and friendly 🥰🥰
☆ Inge ☆ @inge_gubbels
84 Followers 146 Following 💚owner https://t.co/YMg5tupfAU 📝blogger 📷photographer 👩🏼🏫teacher 🏃🏼♀️running girl 🍒pku'er
tricia rutherford @NormanTricia
147 Followers 363 Following Professional interest in nutrition for rare disease . Very amateur interest in sport and music ! All views are my own .
Colleen @uhlollygagger
584 Followers 1K Following mama to three kids-one with Autism,married to Shrek 🏴, teacher, animal advocate, playgroups for shelter dogs, BLM,PKUmom, be kind❣️adopt don’t shop
Stratech Scientific @Stratech_UK
1K Followers 3K Following Suppling premium lifescience reagents for your research 🧪 Clinical Dx @StratechDx [email protected]
Abdullah Din @Abdulla1231431
8 Followers 370 Following
jason PW @jasonPW9
34 Followers 88 Following
Annabelle Skidmore @AnnieSkidmore2
110 Followers 252 Following PhD student @ BCU 🎓 Health Advisor @ BUPA, PKU patient 🌱
Laura Egan @our_rare_road
325 Followers 1K Following Co-Founder and Chairperson of @rareireland, proud koolen de Vries Syndrome mam and rare disease advocate, raising awareness of rare disease in Ireland
Solaris @Solaris575922
1 Followers 36 Following
Ray Remiel @rayremiel
2K Followers 4K Following Poet, storyteller, soul whisperer, mind architect. Speaks in pheromones. Made of moonlight and music ✨ Never unfollow followers. Always unfollow unfollowers.
Elena Merayo @elena_merayo
49 Followers 67 Following #CPKU 🧬 #TDAH🔸 Creando conciencia de las enfermedades raras, y en especial de los errores congenitos del metabolismo con dietas controladas en proteínas
Philip Welch @philipjwelch
60 Followers 110 Following
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
Kate Learoyd @PKUFamily
1K Followers 1K Following Mum, charity trustee, ask awkward questions, trying to cope with this icky platform: support @NSPKU for better future for #RareDisease #pku, tweeting own views
Anita MacDonald @macdonj
2K Followers 633 Following All tweets discuss low protein foods to help children on low protein diets. All views are my own.
Clair W 🧡 @ClairBear42
645 Followers 813 Following Ginger #PKU Adult & Mumma. She/Her. Blogger.👩💻🍓 Expert on films, ice cream, cats and tea. 🎮🌜#ADHD 🏳️🌈
Bernadette Sheehan Gi... @sheehangilroy
1K Followers 5K Following Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
Chloë Ormerod @OrmerodChloe
377 Followers 219 Following
𝔸𝕝𝕖𝕩𝕚�... @mrs_martin_2012
289 Followers 301 Following Wife, mum to an 16 year old with phenylketonuria (PKU), new dog mum, ELCE in Clacks
Promin Metabolics @ProminMetabolic
1K Followers 168 Following Family run company supplying low protein foods and meal solutions for people with #PKU
Caroline Graham @CarolinePKU
405 Followers 641 Following Mum, Designer, Artist, NSPKU volunteer, 3 kids 2 with #PKU all views my own
Małgorzata Henek @ma_henek
383 Followers 553 Following Secretary of ESPKU. PKU Patient & Advocate. Wspieram chorych na Fenyloketonurię. Interesuję się zdrowiem i polityką społeczną. Loves: ski jumping + 📖 🎶📺🚗✈
ESPKU @official_espku
1K Followers 38 Following Official Account of the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria
Duncan Noble-Nesbitt @DNobleNesbitt
278 Followers 193 Following Specialist Nurse, tenor, travel loving, new experience, answer seeking type of guy. Lifelong PKU experience and on treatment #PKU #RareDisease Own views Tweeted
Charlotte Westwood @charlmarx89
214 Followers 336 Following Leftie, mother, cat lover, dysgwr Cymraeg 🏴 and U9s girls ⚽ coach. Views are absolutely my own.
Paul McKellar @mckellar_paul
587 Followers 406 Following English Literature (BA Hons) Graduate 2021. Support Worker. PKU Warrior. Trialist of anything.
Low Protein Connect @LowProConnect
1K Followers 384 Following Providing delicious recipes, education, great services and inspiration to support people with metabolic conditions. #FINDYOURPHENOMENAL
PKUhub @PKUhub
1K Followers 437 Following PKUhub... The virtual meeting point for PKU's...such a big part of a small number of peoples' lives...Est'd 2004. It's all in our genes! 🧬
Synlogic @synlogic_tx
3K Followers 498 Following Synlogic is a clinical-stage biotech company advancing novel, oral, non-systemically absorbed biotherapeutics to transform the care of serious diseases.
United Kingdom Acquir... @UKABIF
9K Followers 4K Following UKABIF provides information, education and networking opportunities. We also facilitate regional groups and campaign on brain injury issues.
TobiasHagedorn @hagedorn_tobias
194 Followers 370 Following Managing Director of DIG PKU Germany; Secretary of European Society for Phenylketonuria (ESPKU); ExecCom Member of Global Association PKU (GAP)
Alvaro Hermida @Info_Rares
2K Followers 1K Following Specialist on Metabolic Diseases and always looking on the bright side of life.
Loz @LdLoz
3K Followers 4K Following Our reading adventure. A mum of 2 sharing a passion. And a love of coffee. #ReadYourOwnHeightChallenge finished 🎊🎊 Book Blogger and Rugby mom 🏉
Liz Hedgecock 📚 @lizhedgecock
2K Followers 2K Following I write mysteries, edit books, and drink a lot of tea. She/her. Books, editing, painting and podcast here: https://t.co/wjZzXyUvMU
Emma 📚🏳️�... @emreadsthebooks
13K Followers 5K Following Emma/Em. #BookTwitter Queer 🏳️🌈 Aries ♈ Read diversely/queer books/classics/contemporary Theatre lover (EDS/Endo/ASD) [email protected]
🦋Emma's Biblio Tre... @Bibliotreasures
11K Followers 6K Following Book reviewer and Blogger. Fibro, CFS/ME, Endo Warrior, CPTSD, #Squadpod
Genetic Alliance UK @GeneticAll_UK
15K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
Mhairi Aitken @mhairi_aitken
1K Followers 320 Following Senior Ethics Fellow, The Alan Turing Institute. Included in the 2023 list of 100 Brilliant Women in AI Ethics
G_ O'D @Gav0Donnell
24 Followers 29 Following Senior Treasury Accountant with @Zurich Chair of @PKU_Ireland #PKU Patient
AL @ManbatiusAL
37 Followers 158 Following Half man half bat! Father of two terrors (both with #Pku), Old car fan (love a Rover), Gamer, Productivity maniac, Footy fan, MMA fan.
Thevoguewriters @thevoguewriters
125K Followers 30 Following feature- Writers / poets / books/ authors . #mentalhealth Dm us for copyright © issue. Dm us for Ad/promotion
Maria Inês Gama @mariainesgama
72 Followers 111 Following Paediatric Dietitian 🏥🧸 PKU enthusiast and dietetic researcher 🥗🧬
AlisonGreen @AlisonGreen70
56 Followers 204 Following Works for @NSPKU - Charity Coordinator - love my job! 😊 two amazing daughters (one a PKU Princess) 🥰
Natasha Fox (Cotter) @foxcot
691 Followers 2K Following Mum of beautiful brave girl born with PKU. Senior leader. NPQH. Swim mum and swim coach. Passionate about teachers being valued. All views my own.
Phoenix Delite @Phoenixdelite
2K Followers 5K Following Luxury handmade Belgian chocolates. Sugar free & Gluten Free Belgian chocolates suitable for diabetics. Dairy & Gluten Free bars suitable for Vegans & PKU.
EmmaW @EmmaWarwick2
658 Followers 589 Following Science enthusiast, Ex-technician. Extrovert, Optimist, Musical theatre lover and Eurovision fan.
StAlbansSymphonyOrch @SASOtweet
223 Followers 144 Following St Albans Symphony Orchestra: a local amateur orchestra based in St Albans. Conductor: @tomhammondmusic Instagram: @stalbanssymphony
IBIA @I_B_I_A
2K Followers 228 Following International Brain Injury Assoc. encourages international exchange of information, to support research, to provide training and to advocate for brain injury.
Claire Morton @ClaireM63345343
11 Followers 36 Following
BBKA @britishbee
16K Followers 890 Following This is the page for the British Beekeepers' Association, a national charity supporting bees and beekeepers.
Langham Wine Estate @LanghamWinery
4K Followers 2K Following Low Intervention English Sparkling Wine, from the rolling hills of rural Dorset. IWSC Sparkling Wine Producer of the Year 2020 🥂
Izabela #PkuDietForLi... @Iza13Kluz
241 Followers 144 Following Wife. Mummy of two wonderful boys, both have #Pku
Danielle McGlynn @_Danielle_Ross_
103 Followers 213 Following Proud PKU Mum and #NSPKU / rare diseases supporter! Dementia carer! Loves our planet! Mad cat lady!
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Elizabeth Hunter SLT @lizziehunter1
65 Followers 113 Following CAMHS Speech and Language Therapist 🌻 all views my own
Metabolic Support @MetabSupport
405 Followers 402 Following The leading patient organisation for inherited metabolic disorders supporting thousands of patients worldwide to live well today, tomorrow
KirstyCharityChat @KirstyCharity
350 Followers 428 Following CEO @wearemsuk. Mum of boys, arts and culture lover. Views my own.
Int. PKU Day @PKU_Day
310 Followers 12 Following
Ed Mielke @TedMilky
474 Followers 1K Following
Cas Leermakers @CLeermakers
111 Followers 551 Following
Wendy Hill @Wendy_Hill01
29 Followers 340 Following
Aoifemlbrennan @aoifemlbrennan
1K Followers 227 Following Drug developer, mother, physician. When not doing those things, you will find me in the garden. Tweets own opinions.
Rebecca Smith @RMSmithPhysio
185 Followers 59 Following NIHR BRC Imperial Post doctoral Physiotherapist Research Group - @VestibularNeuro
makingheadwaypodcast @makingheadwaypo
267 Followers 654 Following We're a podcast sharing brain injury survivor stories and practitioner interviews so that no brain injury survivor feels alone on their recovery journey.
Caddick @Caddick40023484
47 Followers 64 Following
Vanessa Anderson | Bo... @FreelanceOwl
94K Followers 87K Following Author ✍️ | Professional Book Editor 🦉 Helping writers turn drafts into publish-ready stories. MFA | Dev • Line • Copy | Indie & Traditional Publishing
PINK Concussions 🧠 @PinkConcussions
9K Followers 3K Following Female Brain Injury from sport, domestic violence, accidents or military service. Katherine Snedaker, LCSW, Founder and CEO
neumind @neumindapp
329 Followers 456 Following Clinical expertise, tech and understanding to help people with neurological injuries and conditions live more independent, fulfilling and happy lives.
Benjamin Black @BenjamBlack
981 Followers 2K Following Humanitarian. Doctor. Writer. Special Advisor @MSF. Racial injustice panel @birthrights. Award-Winning Author of #BellyWoman Available: https://t.co/91cLIgYOgA
Ben R. Atkinson @BenRAtkinson
2K Followers 3K Following In some alternate reality I'm still on the radio AND making music. Find me on other social platforms under the same handle.
wildwordsfest @wildwordsfest
186 Followers 327 Following A brand new festival celebrating the written and spoken word. Inclusive, inspiring, insightful. June 2022 from the makers of @NonFicPod
Truth About Life With... @danellmer
56 Followers 32 Following Sharing my experiences of life with PKU through my blog, while raising awareness about Phenylketonuria (PKU)
Post Concussion Syndr... @PostConcussion
1K Followers 2K Following Public health services aren't ready to tackle PCS. We are! https://t.co/Vb8o4GKY7U
BIMDG @BIMDG
1K Followers 313 Following Twitter account for British Inherited Metabolic Disease Group. Tweets by Dr James Nurse (@drjnurse) and Dr Rachel Carling (@rachblacklabel).
Martin Reed @IamMartinReed
1K Followers 1K Following Writer, campaigner and 💚Green Party Candidate for Ridgeway Ward, Enfield💚 Promoted by Madeleine Church on behalf of Martin Reed, PO box 81355, London N11 9GB.You might like
ESPKU
@official_espku
1K Followers
Anita MacDonald
@macdonj
2K Followers
Galen Medical Nutriti...
@GalenMetabolics
229 Followers
Charlotte Westwood
@charlmarx89
214 Followers
Paul McKellar
@mckellar_paul
587 Followers