Batten Disease and the Push for Earlier Diagnosis - Dr Jennifer Vermillion
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Batten Disease and the Push for Earlier Diagnosis - Dr Jennifer Vermillion
YouTubeMD Newsline291 views1 month ago
Batten Disease – Vision & Brain Loss #dnasequencing #rarediseases #pediatric #science #humanbiology
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Batten Disease – Vision & Brain Loss #dnasequencing #rarediseases #pediatric #science #humanbiology
YouTubeComputational Genome Biology195 views5 months ago
Batten Disease: How a Batten Mother helps give back to the BDSRA Foundation
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Batten Disease: How a Batten Mother helps give back to the BDSRA Foundation
YouTubeBDSRA Foundation1.5K views7 months ago
‘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 The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail.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 The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail.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
FacebookChannel 4 News11.1K viewsJan 30, 2025
Rare Disease Week 2026 | Batten Disease Advocacy in California
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Rare Disease Week 2026 | Batten Disease Advocacy in California
YouTubeBDSRA Foundation174 views4 months ago
Understanding Batten Disease and Its Impact on Families
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Understanding Batten Disease and Its Impact on Families
TikTok.amandadenise29.7K views5 months ago
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
FacebookEd Davey2K viewsJun 15, 2025
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Two year old diagnosed with rare, fatal disease
YouTubeCourier Mail12 views1 month ago
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Hope for Charli: SA family turns to community support to fight rare, terminal childhood disease
YouTubeKENS 5: Your San Antonio News Source739 views7 months ago
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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
FacebookLove to Emma - Beating Batten51.3K views8 months ago
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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
FacebookOllie's Army Battling Against Battens10.2K viewsJun 15, 2025
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Rare Disease Day - Batten Disease CLN2 Awareness 💜 In honour of Mackenzie Gair 💜 Forever in Our hearts | Mackenzie's Hope
FacebookMackenzie's Hope1.3K views4 months ago
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Dealing with Grief: A Heartbreaking Journey of a Medical Mom
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‘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
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Short videos

0:45
Batten Disease and the Push for Earlier Diagnosis - Dr Jennifer Vermillion
291 views1 month ago
YouTubeMD Newsline
0:07
Batten Disease – Vision & Brain Loss #dnasequencing #rarediseases #pediatric
195 views5 months ago
YouTubeComputational Genome Biolog
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Batten Disease: How a Batten Mother helps give back to the BDSRA Foundation
1.5K views7 months ago
YouTubeBDSRA Foundation
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‘Consequences would be devastating for all the children if they were removed from it’.
11.1K viewsJan 30, 2025
FacebookChannel 4 News
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Rare Disease Week 2026 | Batten Disease Advocacy in California
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YouTubeBDSRA Foundation
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Understanding Batten Disease and Its Impact on Families
29.7K views5 months ago
TikTok.amandadenise
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Batten Disease is a rare, terminal neurodegenerative condition that severely impacts
2K viewsJun 15, 2025
FacebookEd Davey
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Two year old diagnosed with rare, fatal disease
12 views1 month ago
YouTubeCourier Mail
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Hope for Charli: SA family turns to community support to fight rare, terminal childhood diseas
739 views7 months ago
YouTubeKENS 5: Your San Antonio
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My husband and I learned that our daughter was born with a rare disease known as Batten
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