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Batten Disease and the Push for Earlier Diagnosis - Dr Jennifer Vermillion
0:45
Batten Disease and the Push for Earlier Diagnosis - Dr Jennifer Vermillion
291 views1 month ago
YouTubeMD Newsline
Batten Disease – Vision & Brain Loss #dnasequencing #rarediseases #pediatric #science #humanbiology
0:07
Batten Disease – Vision & Brain Loss #dnasequencing #rarediseases #pediatric #science #humanbiology
195 views5 months ago
YouTubeComputational Genome Biology
‘Consequences would be devastating for all the children if they were removed from it’. The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail. Victoria Macdonald reports on a family desperate to ensure the treatment continues. #BattensDisease #NICE #NHS #GOSH #Health #Channel4News | Channel 4 News
2:46
‘Consequences would be devastating for all the children if they were removed from it’. The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail. Victoria Macdonald reports on a family desperate to ensure the treatment continues. #BattensDisease #NICE #NHS #GOSH #Health #Channel4News | Channel 4 News
11.1K viewsJan 30, 2025
FacebookChannel 4 News
Two year old diagnosed with rare, fatal disease
1:54
Two year old diagnosed with rare, fatal disease
12 views1 month ago
YouTubeCourier Mail
Rare Disease Week 2026 | Batten Disease Advocacy in California
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Rare Disease Week 2026 | Batten Disease Advocacy in California
174 views4 months ago
YouTubeBDSRA Foundation
Understanding Batten Disease and Its Impact on Families
2:01
Understanding Batten Disease and Its Impact on Families
29.7K views5 months ago
TikTok.amandadenise
Batten Disease is a rare, terminal neurodegenerative condition that severely impacts children and young people. It’s heartbreaking, and I want to thank the Batten Disease Family Association for their tireless support of families facing this cruel disease. | Ed Davey
0:42
Batten Disease is a rare, terminal neurodegenerative condition that severely impacts children and young people. It’s heartbreaking, and I want to thank the Batten Disease Family Association for their tireless support of families facing this cruel disease. | Ed Davey
2K viewsJun 15, 2025
FacebookEd Davey
0:11
My husband and I learned that our daughter was born with a rare disease known as Batten Disease when she was 3 years old. Batten Disease is a neurodegenerative childhood disease that I wouldn’t wish on anyone. It’s tragic. Emma is 8 years old in this video. Samuel, her brother, is 2. In a lot of ways, Emma is on the same developmental level as her brother. But in many ways, she is just like a normal 8 year old. We have learned to embrace little moments like laughter in our home. It truly lessens
51.3K views8 months ago
FacebookLove to Emma - Beating Batten
0:47
Our little boy Jeffrey has a rare and incurable genetic condition, known as Battens Disease, which causes seizures and progressively takes away a child’s ability to walk, talk, and see. Jeffrey is eight years old now and is the sweetest boy - his bright brown eyes and cheeky smile could light up any room. You may have also spotted Jeffreys bear, Jeff DaBear, in his photos. Jeffrey never goes anywhere without him! 🐻 Jeffrey has regular treatments to help slow down the progression of his conditio
18.1K viewsJul 8, 2025
FacebookDerian House
1:15
Feeling incredbly loved by all those around us 🧡Here are just a few pictures we managed to caputure on Batten Disease Awareness Day 2025. A massive thank you to everyone who got involved and helped to raise awareness of such a rare yet devastating condtion. A huge thank you especially to our local community for once again turning our village orange, by doing this we know that questions will be asked as to why everywhere is decorated orange and this in turn will start converations regarding Batt
10.2K viewsJun 15, 2025
FacebookOllie's Army Battling Against Battens
0:35
Rare Disease Day - Batten Disease CLN2 Awareness 💜 In honour of Mackenzie Gair 💜 Forever in Our hearts | Mackenzie's Hope
1.3K views4 months ago
FacebookMackenzie's Hope
2:36
Charlotte just turned five. It's expected she will only live until 14, at most. She was diagnosed with Battens Disease CLN2 - an incredibly rare terminal condition which causes the neurological system to decline over time - also known as Childhood Dementia. Her family is making the most of every day they have with her, while spreading awareness on the cruel disease. To learn more, visit https://m.youtube.com/watch?v=JSEH0OIeK9I&feature=youtu.be or the News Section of our website. #AlwaysCare #Ba
58.1K views6 months ago
FacebookGold Coast Health
1:02
Dealing with Grief: A Heartbreaking Journey of a Medical Mom
5.1M viewsJun 19, 2024
TikToklilymartin0131
1:56
Amelia's Battle with CNL2 Batten Disease Awareness
1.6M views9 months ago
TikTok_ollies_army
1:00
Emma's Care Routine: Maintaining Health & Safety
716.2K viewsMay 5, 2024
TikToklilymartin0131
2:24
Understanding IPV Machines in Respiratory Therapy for Battens Disease Patients
240.9K viewsDec 26, 2023
TikToklilymartin0131
2:45
‘Consequences would be devastating for all the children if they were removed from it’ The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail. We speak to a family desperate to ensure the treatment continues. #BattensDisease #NICE #NHS #GOSH #Health #Channel4News
297.3K viewsJan 30, 2025
TikTokc4news
0:33
Understanding Batten Disease: A Mother's Fight
380.6K viewsJan 17, 2025
TikToklove.to.emma
2:32
Vancouver Island Family Celebrates Funding for Batten Disease
74.5K viewsJul 19, 2025
TikTokcbcbritishcolumbia
0:09
Alara's Batten Battle (@haylei89)’s video of batten disease
48.7K viewsNov 14, 2024
TikTokhaylei89
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