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"IMAGINE" follows the story of Millie, a little girl who dreams of being a dancer, yet suffers from Niemann Pick Type C; an extremely rare, incurable disease which causes neurological decline and dementia: youtube.com/watch?v=4gVcI_… NPUK INPDA @Hope4Hollie #rare

Mum of two Jodie Ann Ogrady speaks openly about how her life has been affected by receiving a Niemann-Pick disease type C diagnosis: "...Niemann-Pick UK have supported me massively. When Joshua was diagnosed at eight months... youtube.com/watch?v=1myrzf…

In April the #DementiaStrikesChildrenToo campaign launched in Westminster Tube Station to raise awareness of childhood dementia, and drive for better clinical education of Niemann-Pick, Batten disease, and MPS. For more info tweet: NPUK BDFA MPS Society UK, here for those with rare diseases

What is the Think Again. Think NP-C campaign, and why is it important? Currently Niemann-Pick type C disease (NP-C) takes, on average, five years to diagnose. However, NP-C is treatable and so this... facebook.com/RareRevolution…

Now more than ever, we are one team. #playinside #playfortheworld

The Easter eggs formerly known as Prince

Cara Gilmore, a patient with adult onset Niemann-Pick disease type C (NPC), discusses her diagnostic journey. NNPDF National Niemann-Pick Disease Foundation, Inc. NATIONAL NIEMANN-PICK DISEASE FOUNDATION checkrare.com/adult-onset-ni…

Thanks to Rushanara Ali MP 💙 for highlighting the role that charities are playing in the recovery, and that additional support is needed at the Budget to make sure this work continues #RightNow

Thank you Sunderland UK for showing your support for the many families impacted by a rare disease. We are rare, we are #Many #Strong #Proud #RareDiseases #niemannpick #npc #ASMD #RareDiseaseDay2021

This year we will be welcoming a very special guest speaker to our Annual Conference! Tony Somers, a professional... fb.me/89LddrdmY

This video tells an incredibly emotional and touching story - one of a brave boy: Lleyton Coombes, and his... fb.me/5EgdHBXAc

We have had an very positive year, and we owe it all to you - our community! This video, which looks back on... fb.me/2hcuRw1od

We are sad to announce that after 25 years NPUK founding member Jim Green, is stepping down from his position on... fb.me/8nDGolOvB

Follow the link to read Vtesse's December 2016 Newsletter, which provides an update on the clinical trial of... fb.me/1rHdpqgNG

We are pleased to share Update #12 on the AIDNPC Clinical Programme, courtesy of Orphazyme: The AIDNPC clinical... fb.me/83i1SYi5N

ASMD PRO Study Development - Opportunity for Patients to become involved in Phase Two: We are pleased to share... fb.me/10xCEvQbR

#RAREvolution: Stand Up for Scientific Research on Rare Diseases! BLACKSWAN Foundation is a Swiss foundation... fb.me/3gbJg0Nf1

Fire Arrow #playstationlive

In this new video Professor Marc Patterson (Professor of Neurology, Paediatrics, and Medical Genetics - Mayo... fb.me/8pFad1eVu