Ely Bowman, 4-Year-Old Boy, Receives New Drug For Batten Disease
3:31
Ely Bowman, 4-Year-Old Boy, Receives New Drug For Batten Dis…
Sep 8, 2017
International Business TimesPritha Paul
A new children's book is helping families talk about rare, fatal Batten disease
A new children's book is helping families talk about rare, fatal Batte…
Dec 3, 2022
ABC NewsKathleen Calderwood
Today we received the news that The National Institute For Health and Care Excellence (NICE) has changed their decision making the ONLY treatment for Batten Disease in the world available on the NHS in England. A deal has been reached between the pharmaceutical company, Biomarin and NHS England. The treatment will be available to children with Batten Disease under a Managed Access Agreement whilst NHS England gather evidence over a period of four and a half years. The news of this decision has b
0:25
Today we received the news that The National Institute For Health a…
20.7K viewsSep 11, 2019
FacebookOllie's Army Battling Against Battens
“It’s Dr. Emily’s relentless effort to stop Batten disease in its tracks that’s given our daughter a quality of life we didn’t think was possible when she was first diagnosed. I just want to hug her every time I see her.” -Tayla’s Mom #WomenInScienceDay | Nationwide Children's Hospital
1:26
“It’s Dr. Emily’s relentless effort to stop Batten disease in its tracks t…
57.6K viewsFeb 11, 2020
FacebookNationwide Children's Hospital
Batten Disease
Batten Disease
May 8, 2018
nationwidechildrens.org
Designing an 'n of 1' drug for Batten disease | Boston Children's Hospital
1:49
Designing an 'n of 1' drug for Batt…
NATIONALLY RATED HOSPITAL
About this channel
YouTubeBoston Children's Hospital
Twins Toby and Cory, and their little sister Izzy all have the rare condition juvenile Batten disease. Children with this disease experience devastating symptoms including sight loss resulting in blindness, tremors, epilepsy, problems with balance and walking, behavioural and psychological issues. And tragically, the disease is fatal. We have recently funded a study that could offer the first-ever medicine for children suffering from the condition - giving hope to parents Dee and Jody, that one
0:45
Twins Toby and Cory, and their little sister Izzy all have the rare conditi…
15.3K viewsFeb 8, 2019
FacebookAction Medical Research
0:39
Batten Disease and Childhood Dementia
Jun 8, 2023
ABC NewsSupplied: Mandy McWaters
1:00
Batten Disease: The Diagnostic Journey
321 viewsNov 11, 2021
YouTubeBDSRA Foundation
1:31
CLN2 Batten Disease progression - Noah's Hope
11.1K viewsFeb 19, 2016
YouTubeTracy VanHoutan
0:58
Our hope is that those making the decision on whether the treatmen…
53.2K viewsJul 9, 2024
FacebookOllie's Army Battling Against Battens
4:32
Amelia and Makenzie's juvenile Batten disease (CLN3) story.
117.2K viewsOct 21, 2021
YouTubeForeBatten Foundation
2:25
9,500 Miles to Hope | Tayla’s Batten Disease Journey
19.6K viewsOct 3, 2019
YouTubeNationwideChildrens
4:10
Braving Batten Disease: Hope for Annabelle & Abigail
26K viewsAug 2, 2022
YouTubeAnn & Robert H. Lurie Children's Hospital of Chi…
Children with rare genetic disease get world-first treatment to save si…
Jan 10, 2022
gosh.nhs.uk
0:11
Today is International Batten Disease Awareness Day 🧡 This mea…
7.1K viewsJun 9, 2023
FacebookOllie's Army Battling Against Battens
Understanding Gene Therapy for Battens Disease Progression
153.7K viewsJan 11, 2023
TikTokwhatif.itsizzy
3:08
3 children with rare, fatal disease access treatment to prolong their l…
Aug 9, 2023
Global News
4:20
Our little girl Matilda's battle with rare Batten Disease
31.3K viewsAug 22, 2016
YouTubeElizabeth Sanson
Life-changing Batten disease drug gives hope to children affected by …
Jul 7, 2018
ABC NewsKathleen Calderwood
0:29
What If We Could Understand Batten Disease Progression?
1.5K viewsFeb 7, 2025
YouTubeDel Monte Institute for Neuroscience
Battin' for Batten, funding a cure for Juvenile Batten's Disease
Sep 16, 2018
ketv.com
6:51
The Faces of Batten Disease
13.9K viewsNov 12, 2009
YouTubeBeyond Batten Disease Foundation
3:18
Batten Disease and Gene Therapy
11.3K viewsSep 1, 2020
YouTubeASGCT
23:17
614K views · 14K reactions | Ellery is diagnosed with a progressive...
614.7K views2 weeks ago
FacebookSpecial Books by Special Kids
Milasen: Genetic diagnosis to custom drug, in under 1 year - Bo…
Oct 10, 2019
childrenshospital.org
3:39
Batten Disease--Why Noah's Hope
4.3K viewsMar 14, 2012
YouTubeRare Disease Day
Understanding Batten - Beyond Batten Disease Foundation
Jan 7, 2020
beyondbatten.org
37:29
Jonathan D Cooper, PhDUnderstanding Batten Diseas…
2.5K viewsMar 21, 2019
YouTubeLabroots
1:22
What is Batten Disease
6.9K viewsOct 7, 2016
YouTubeRare Disease Report
See more videos
Static thumbnail place holder