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- เผยแพร่เมื่อ 18 ต.ค. 2024
- In the following video, originally shared as part of our celebrations for Rare Disease Day 2023, National Niemann-Pick Disease Foundation (NNPDF) Board Member Cara Gilmore provides insight into her journey with Niemann-Pick disease type C and the impact of Dysarthria on her day to day life.
The video also features Dr. Robin Lachmann (UCL) who gives expert insight into how Dysarthria can be one of the ways in which Niemann-Pick disease type C can be diagnosed.
This video was made possible with kind support from Azafaros, to learn more about their company please visit: www.azafaros.com
At NPUK we are a charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. Our central goals are to raise much needed awareness, provide practical and emotional support, advise and information and facilitate research into potential therapies for NPD.
To learn more about Niemann-Pick UK (NPUK) and Niemann-Pick disease, please visit us at our site: http//www.npuk.org
#Support #Community #Progress #Care #Support #NiemannPickUK #NPUK
Awesome job Cara
She's incredible! Thanks for watching
I'm a parent of an NPC patient. The information in this video has helped me understand why my spouse and I don't hear many words from our daughter. Thank you Cara for sharing.
My daughter has Type B. I pray that she survives into adulthood. NPD is so devastating. You did well with your speaking. 💖
I am from Brazil. My stepdaughter has this disease.
Thanks for the content. It has little information for us to inform ourselves
Hello there, thank you for watching but we are sorry to hear you didn't find this patient story informative. May I suggest our website, here: www.npuk.org or perhaps the following video instead: th-cam.com/video/v9YxAWxxuQI/w-d-xo.html
We wish you and your family the best: we have links with wonderful support groups in Brazil, so please do stay in touch!