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Throwback to the incredible NPUK family conference at Wyboston Lakes, April 4-6th, 2025! We're revisiting some powerful moments and connections made. Here is Rafi Berkowitz from South Africa! @NiemannPickUK
#NiemannPickUK #NiemannPick #NPUK #NPUKConference #ASMD #NPC
We're just about to come back after a lunch for out next interactive session. Up first is Caroline Hastings M.D. on "One physicians odyssey in to rare disease".
@NiemannPickUK
#NiemannPickUK #NiemannPick #NPUK #NPUKConference #ASMD #NPC
Thanks to our partner @NiemannPickUK for having us at the Annual Family Conference & Interactive Workshop! We were honored to join families, advocates, scientists & clinical professionals working to progress care, research & therapies for Niemann-Pick diseases. #NPC #NPUK #INPDR
We would like to thank Dr. Julian Raiman of the Birmingham Women's and Children’s Hospital NHS Foundation Trust for presenting at this year’s @NiemannPickUK Annual Family Conference & Interactive Workshop.
$CYTH #NPC1 #NiemannPickUK #NPUK
We are thankful for another opportunity present at the @NiemannPickUK Annual Family Conference & Interactive Workshop and to reconnect with #NiemannPick families, friends and professionals.
$CYTH #NPC1 #NiemannPickUK #NPUK
Get social at the Annual Family Conference & Interactive Workshop 2023 - which will be held on the @WhovaSupport app, here: https://t.co/t206V96EIE
See you soon!
#conference #family #support #charity #npuk
🎮📝 NPUK #Review: #TinHearts
@Uberphoenix95 marches tin soldiers through a toy-filled world in @RogueSunGames & @WiredP narrative puzzle adventure game
Is this mix of environmental storytelling and Lemmings-like puzzles more than the sum of its parts?
https://t.co/VwD1Z7bkFD
We loved seeing Weruche Opia, in the latest series of Black Mirror! You can catch it on Netflix.
Back in 2021 Weruche provided the epilogue for our short, Invisible Manners: https://t.co/pebKerWg18
#invisiblemanners #invisibleinterviews #shortfilm #animation #blackmirror #npuk
In this short blog we chat with a familiar face within the NPUK community – Thomas Kirkegaard Jensen, our new trustee!
You can read more at the NPUK website, here: https://t.co/8lTGjzYNjG
#boardoftrustees #trustee #smallcharity #niemannpickuk #npuk
And just like that all of the @NiemannPickUK "Invisible Interviews" are now available to watch and share - thank you to all who were involved and helped to make them happen! 📽️
Watch them all, here: https://t.co/HC08KK9sC9
#shortdocs #shortfilm #sheilareid #raredisease #npuk
Next up in the Invisible Interviews series...the fourth and final instalment, Alec's Story feat. Alec and Gail Koujaian alongside narration by Sheila Reid. Can't wait to share this hugely entertaining but emotional short - many thanks to all involved ❤️ #shortfilm #npuk #inpda
We are thrilled to be a part of this alongside @GeneticAll_UK - many thanks to everyone who supported @NiemannPickUK and our entry, Invisible Manners ❤️ Looking forward to the event #CharityFilmAwards #shortfilm #npuk
We're so excited to be shortlisted for a @SmileyCFA, alongside our member @NiemannPickUK and some other great organisations.
Good luck everyone!
Well done to Nadia for her ongoing advocacy in support of the @NiemannPickUK community in the face of such adversity. Inspiring #niemannpickuk #npuk
We are pleased to share "Nadia's Story", the second of four documentary short films in the "Invisible Interviews" series: https://t.co/5euacbynjj #childbereavement #bereavement #npuk
We are pleased to share "Nadia's Story", the second of four documentary short films in the "Invisible Interviews" series: https://t.co/5euacbynjj #childbereavement #bereavement #npuk
We are thrilled to finally be able to share "Graham's Story", the first of four documentary short films narrated by Sheila Reid, which will form the "Invisible Interviews" series: https://t.co/sHuNSZK1KG
#documentary #shortfilm #indyfilm #smallcharity #npuk
As #NiemannPickAwarenessMonth comes to an end, we encourage you to visit https://t.co/s9aXCsanY8 to access a range of resources and tools for individuals and families affected by #NiemannPick Disease.
$CYTH #NPC1 #TeamNPUK #NPUKFamily #NiemannPickUK #NPUK #NiemannPickChampion
Our Purpose: We are dedicated to developing life-changing medicines for patients and families living with challenging diseases.
$CYTH #NiemannPick #NPC1 #AlzheimersDisease #TeamNPUK #NPUKFamily #NiemannPickUK #NPUK #NiemannPickChampion
We are dedicated to advancing a potential soliton for serious cholesterol transport diseases. Learn more about our innovative platform technology here: https://t.co/LWm5FmVSv2
$CYTH #NiemannPick #NPC1 #TeamNPUK #NPUKFamily #NiemannPickUK #NPUK #NiemannPickChampion
Such a great atmosphere today for the Mario Kart @NintendoPlayUK Championships 2022 🍄 Such a passionate group of people from all over the country ☺️ Caps off to #NPUK and @NintendoUK for putting this together ❤️
"...the clock is ticking. Niemann-Pick Disease Type C is rare, progressive, and fatal. Patients and their families urgently need effective treatment options, and we must work together to advance clinical studies..."
#support #community #progress #niemannpickuk #npuk
Our Key Takeaways from the @NiemannPickUK Annual Family Conference & Workshop https://t.co/VCNfJEO6DU
#NiemannPick #NPC1 #NiemannPickAwarenessMonth #TeamNPUK #NPUKFamily #NiemannPickUK #NPUK #NiemannPickChampion
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