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Our first ever Niemann-Pick UK e-newsletter is making the rounds! We intend for this newsletter to be a monthly round up on all things NPUK inbetween issues of our bi-annual magazine, NPUK News. Check it out here: https://mailchi.mp/de34f8efb94e/npuk-enews-january2020 …
#ENews#NiemannPickUK#NPUKpic.twitter.com/o0nqBBS8tX
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NPUK proslijedio/la je Tweet
Did you know... Sensory bags are available in the Royal Hospital for Children outpatient clinics if your child becomes stressed or agitated while waiting for an appointment. Just ask at the clinic desk!pic.twitter.com/M7Lx9rl6oL
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NPUK proslijedio/la je Tweet
Do you have a
#raredisease? Take part in our focus groups to have a say in how your care is coordinated.#CONCORDstudypic.twitter.com/zWCLaJLR0r
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We are over the moon to hear that our latest short film, Go Make Memories, has been shortlisted for the
@CharityFilm_ ...thank you to everyone who voted! We nervously wait for the next stage


#GoMakeMemories#ShortFIlm#NiemannPickDisease#NPUKpic.twitter.com/bL2PCBUQCg
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NPUK proslijedio/la je Tweet
Happy New Year! What’s been your favourite memory of 2019?pic.twitter.com/uEmTyDPq51
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NPUK proslijedio/la je Tweet
The deadline to nominate
#raredisease advocates, organizations & researchers for a@RareDiseases Rare Impact Award is Thursday, January 2nd. Acknowledge the change-makers in your rare community by nominating them at https://rarediseases.org/ria-nominations-2020/ ….
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NPUK proslijedio/la je Tweet
Merry Christmas to all our rare warrior friends!
#TasteThatSnow!pic.twitter.com/Gn4jYSvldy
Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
NPUK proslijedio/la je Tweet
Merry Christmas! We hope everyone is having some festive fun!pic.twitter.com/tkuuPuowfm
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NPUK proslijedio/la je Tweet
Breaking News: The FDA have granted
@Orphazyme_AS’s drug,#arimoclomol, for the treatment of#IBM, Fast Track designation. Fast Track designation is designed to expedite the development and review of drugs. Read more >> http://bit.ly/2rce4OE pic.twitter.com/ynvCJyCDO5
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NPUK proslijedio/la je Tweet
@NiemannPickUK it’s a great charity, it helps so many people with this Rare incurable Diease they have helped my Son so muchHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
NPUK proslijedio/la je Tweet
Busy Life’s featured in the
@NiemannPickUK magazine! Take a look!#thankyou#support#giving#charity@smallbizshoutUK@Retweeting001@RandomRetweete3@TheChirpNetwork@ATSocialMediaUK@PromoMyShop@smallbizhype@vipmumsndads@wecanaccess@ParallelGlobal@UKRunChatpic.twitter.com/raXYBgkRbs
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NPUK proslijedio/la je Tweet
It's
#GeneralElection19 week! If you have not done so already, tweet your candidate via http://ow.ly/LBQx50xtJQz to ask them to sign#Pledge4Patients
. Let's ensure the voices of #RareDisease patients are heard!pic.twitter.com/tzsGHhyHiz
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Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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NPUK proslijedio/la je Tweet
As we all continue to shop for gifts
can I ask you to consider donating any unwanted gifts
you may have- either those bought for you or if there’s a “buy 3 for the price of 2” if you don’t need 3 please get it and give to us for our 2020 events (there’s lots happening) TYIApic.twitter.com/CkZorkZiBr
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NPUK proslijedio/la je Tweet
There's still time to apply for this exciting opportunity with the INPDR. Wouldn't it be amazing to start 2020 with a new job that will make a real difference to the Niemann-Pick and rare disease communities!?https://www.linkedin.com/jobs/view/1580519271/ …
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NPUK proslijedio/la je Tweet
Louise Metcalf from Niemann-Pick UK
@NiemannPickUK shares their projects and insights@BarriersDown#BreakingDownBarriersWorkshoppic.twitter.com/kvGwdraJl4
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NPUK proslijedio/la je Tweet
Disorder: The Rare Disease Festival showed nearly 60 films about various
#rarediseases such as giant axonal neuropathy, Huntington's disease, cystic fibrosis, Batten disease and morehttps://smanewstoday.com/2019/11/15/rare-disease-film-festival-highlights-patient-researcher-unity-cf-other-disorders/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
NPUK proslijedio/la je Tweet
Is it fair that
#raredisease patients have to fight for access to life-changing treatments? Will your future MP work to fix the problems? Check http://pledgeforpatients.org.uk#Pledge4Patients#GeneralElection2019pic.twitter.com/tRzzIR34BN
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NPUK proslijedio/la je Tweet
We've put short film I made online. It's about 9 yr old Edinburgh boy, Alexander, who has Niemann-Pick C disease: https://vimeo.com/354497021 . It's sad. He's lovely. Please watch + RT. Thank you
@NiemannPickUK@davidfkey@mogwaiband@Timotheus_ https://www.npuk.org/get-involved/donate/ …@Orphazyme_ASHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Amazing news! "Go Make Memories" was just selected by
@feelthereelfest via http://FilmFreeway.com !Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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