CEO @pbcfoundation, also Chair Paed/Rare Liver Diseases Council @globallliver Chair @liverpatients Support Advocacy Strategy Listening Views my own
Edinburgh, Scotland
Joined December 2013
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Now that I am rested, I wanted to reply properly to this. Thank you Michelle. I appreciate the sentiment as I do what I can. But here is the thing: you are my heroes. You are my inspiration. Every single peraon affected by PBC that I encounter: helpline, online, face-to-face 1/
Is this a thing?? blog.maryannedemasi.com/p/ma…
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@British_Airways is this really how you treat your loyal customers?
Convo 1- change of 1 part of a flight £150
Phone goes dead
Convo 2- 3 minutes later- change of 1 part £3004
Three thousand and four pounds.
Satellite symposium with @GileadSciences at @EASLedu congress #Amsterdam
Another optuon in PBC to prevent disease progression?
#UDCA #OCA #Elafibrinor #Seladelpar #ANewHope @PBCFoundation @LiverPatients @Collettepbc @PBCMo @josewillemse @electricdreamz
Quite possibly the busiest PBC academic session ever.
I mean ever.
Ever ever.
Dr Gideon Hirshfield sharing linerixabat data on itch in #PBC at @EASLedu congress in #Amsterdam
@PBCFoundation @LiverPatients @Collettepbc @PBCMo @adyeoman @GSK @josewillemse
Gutted to say not going back to @MySamsonite . Lord knows I travel, but poor service refusing a faulty item to repair/replace (a product still on the shelves in the shop) is not what I thought the Samsonite brand was about. Live and learn. Share, ask, go elsewhere.
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An interesting day... we have permission to host a @PBCFoundation protest in Brussels re the ridiculous decision to recommend OCA license revoke in #PBC
Anyone want to join us?? Details to follow if you are interested... historic day for PBC patients.
Not entirely safe for work... but he does make a point or two. This is a difficult day for many people holding their nose and going for the best-ish of a really bad lot. If nowt else, NHS needs change, help, and to survive.I know who I am not voting today...
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Nobody talking about dropping Kame- he is the problem- doesn't run behind.
GK- Pickford
Back 4- Tripper, Walker, Stones, Guehi
Holding- Rice, Trent
Top 4- Bellingham, Foden, Saka, (Watkins or Toney)
Eng needs runners behind to threaten and create space
Thoughts?
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Woo Hoo. So, so excited.
Registration is open!!
Looking forward to another incredible event.
Free to every single PBC patient who wants to attend- in person or online.
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Adrian van der Meer presenting @EASLedu symposium with @CymaBay talking about care targets. Majority of room voted normal ALP and normal bilirubin.
It only took 1 year from #PBCSummit for normal to be new normal. Credit to attendees such as Gideon Hirschfield and @RobertGish
Amazing work, Mo.
Accurate. Succinct. Passionate yet measured. @
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I see both elafibrinor and OCA are on the agenda.
Anybody know anything else?
My fear is there is no patient representation at these discussions- can anyone reassure me?
@adyeoman @CholestasisDoc @MichaelHenegha8
The agenda of EMA's human medicines committee #CHMP is now published.
Find out what medicines will be discussed this month 💊💉europa.eu/!8NQ6cy
The committee highlights will be released on Friday.
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I have seen a couple of his excerpts and both were excellent- calm, thoughtful and pertinent. Almost gives you hope that we can do better...
Victor Adebowale, "I do wonder.. In some countries they have rent controls.. And they don't have a shortage of social housing" #BBCQT @Voa1234
"My wife is is a health visitor. She gets a lot of people who have really serious illnesses caused by poor housing conditions.. And I do wonder if the NHS should treat those people, and then send the bill to the landlord"
"And stop calling affordable housing affordable housing when it isn't"
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A great video explaining some of the basics...
On #WorldLiverDay, we recognize the liver's central role in a myriad of vital functions in the body. With chronic liver disease on the rise, education surrounding #LiverHealth is so important. Watch to learn more about #PrimaryBiliaryCholangitis, a rare liver disease.
We are so grateful to all the runners supporting our work. Look out for them in our new purple running shirts.
Meantime, congratulations and good wishes to every single runner taking on this year's #LondonMarathon. Just get round safely.
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When you see speeches like this, then compare to what the hell is going on in govt... it's almost like we were lied to and he was villainised by our media. Just as well that would never happen in our country, isn't it...
Boris Kagarlitsky. Julian Assange. Dr. Ghassan Abu-Sittah.
All around the world, the freedoms of anti-war campaigners are under attack. We have to stand up equally for human rights, everywhere.
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The incredible power of the International PBC Summit.
"Early this year, @PBCRobert, CEO of @PBCFoundation, invited me to attend the International #PBCSummit. Since I was diagnosed with #PrimaryBiliaryCholangitis (PBC), I have been slowly building my advocacy repertoire." Read more ➡️ brnw.ch/21wIyiz
#RareDisease
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So the wording of the Hate Crime Bill is actually reportable as a hate crime?!?
What have we become?
To the girl in the orange hoodie,
I don't know your name but I know you have more grace, courage and strength than any other person in that video.
I know your journey. I see you. I am now a leader and a CEO- my journey- very similar to yours- brought me here. ❤️
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