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Batten Disease News

Batten Disease News is a digital platform providing daily updates on research, science and advice news for Batten Disease patients and caregivers.
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21/08/2024

Columnist Cristina Vargas envisions a vacation getaway to recharge her family's batteries. It's a serene haven she sees. https://buff.ly/3MgZVW8

07/08/2024

Caring for her son with Batten disease is a priority, but columnist Cristina Vargas also makes sure to set aside time to pursue her dreams. https://buff.ly/46CYLha

05/08/2024

The University of Rochester Batten Center was designated a Center of Excellence by the BDSRA Foundation for helping advance care and research. https://buff.ly/3LXNA96

26/07/2024

Brineura (cerliponase alfa) was approved by the FDA as a treatment for late infantile Batten disease, or CLN2. https://buff.ly/3ypkkVH

17/07/2024

Columnist Cristina Vargas' family vows to cherish moments of happiness and nature this summer, despite the challenges posed by rare disease. https://buff.ly/4689EXX

03/07/2024

Growing up with a sick sibling is tough, says columnist Cristina Vargas, whose teenage daughter, Faith, has two siblings with rare diseases. https://buff.ly/467arZv

01/07/2024

Drinking acidified water improved motor performance, restored muscle strength, and prevented tremors in late infantile Batten mice. https://buff.ly/4cAZXUg

19/06/2024

Being an advocate for her son with late-infantile Batten disease has taught columnist Cristina Vargas why spreading awareness matters. https://buff.ly/4b9bglg

03/06/2024

Fundraising, storytelling, and advocacy are the focus of this year's International Batten Disease Awareness Day, observed annually on June 9. https://buff.ly/3V627DV

08/05/2024

Columnist Cristina Vargas hopes to help other parents of children with chronic illness by sharing her experience as a mother of two. https://buff.ly/3wh7hot

06/05/2024

Eighteen months treatment with Batten-1 stabilized juvenile Batten patients’ motor symptoms, final results from a Phase 1/ 2 trial show. https://buff.ly/44uDyF2

03/04/2024

Parenting a child with late-infantile Batten disease is a difficult journey. Columnist Cristina Vargas offers supportive insight for parents. https://buff.ly/3PNumFJ

01/04/2024

A CLN5-targeted gene therapy delivered simultaneously to the brain and eye showed benefits in a sheep model of late infantile Batten disease. https://buff.ly/4cDO2Wo

20/03/2024

In a letter addressed to her son, columnist Cristina Vargas shares how much Juju's strength and resilience have inspired her. https://buff.ly/4ci6BiN

04/03/2024

A child with infantile Batten disease was given treatment with a 'deprioritized' gene therapy in an individual-patient study in Chicago. https://buff.ly/43auQLx

08/02/2024

After nearly five years, columnist Laura King Edwards bids readers farewell. But the rare disease fight is far from over, she says. https://buff.ly/3uyh8VN

07/02/2024

In her debut column, Cristina Vargas explains how the difficult journey of her son's late-infantile Batten disease diagnosis affected her. https://buff.ly/4bqFxxl

05/02/2024

A small molecule inhibitor of the sortilin protein eaed neuroinflammation and improved lysosome function in mouse models of Batten disease. https://buff.ly/49pCmnU

16/01/2024

Help connect rare disease communities for more effective advocacy and support for all. Take our survey for a chance to win 1 of 10 $50 Amazon eGift cards: https://bit.ly/3vJk568

04/01/2024

An experimental gene therapy for late infantile Batten disease was found to be safe and appeared to be working as designed in an animal study. https://buff.ly/41K6Y0G

07/12/2023

Regenxbio will not move forward with RGX-181 and RGX-381, two gene therapy candidates for treating late infantile Batten disease. https://buff.ly/3T816Mq

02/11/2023

Minimizing provoking situations and increasing pain and discomfort thresholds may help ease fear episodes for juvenile Batten patients. https://buff.ly/3QJpja0

12/10/2023

A child with late infantile Batten disease saw an over 80% reduction in seizures with the gene therapy RGX-181 in a single-patient study. https://buff.ly/3Fh2bcs

28/09/2023

The 4th annual Orphan Drugs and Rare Diseases Conference, on Oct. 9-10, aims to bring attention to new therapies and continued challenges. https://buff.ly/3F2IXHn

21/09/2023

A Sept. 28 webinar will explore challenges in clinical research in pediatric rare disorders, such as Batten, and strategies to tackle them. https://buff.ly/3t3gDCe

20/09/2023

"Blind Momentum" follows columnist Laura King Edwards' world-record attempt at the Kiawah Island Half Marathon in honor of her late sister. https://buff.ly/3PIHKvd

07/09/2023

The University of Rochester Medical Center was awarded funding to remain in NeuroNEXT and make clinical testing possible for Batten disease. https://buff.ly/3sK9K8K

31/08/2023

Digital biomarkers require further validation, but offer promise for conducting more robust clinical trials in rare diseases, a study says. https://buff.ly/47SG1dQ

24/08/2023

Regenxbio is advancing two gene therapies in its pipeline that both treat eye problems in CLN2 disease, a common form of Batten disease. https://buff.ly/3EcPTRU

23/08/2023

Columnist Laura King Edwards will try to break a world record for the fastest blindfolded half-marathon to honor her late sister, Taylor. https://buff.ly/3KPLisw

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AWIR - Learning From Each Other

Patient advocate Liza Bernstein explains how #AWindowIntoRare will highlight what we can learn from each other as members of the #raredisease community. Join #BioNews in an online panel discussion + Q&A on #RareDiseaseDay at 3 p.m. EST Feb 28. Register: https://bit.ly/Bionews_RegisterNow

Rare Disease Day - A Window Into Rare

Patient advocate Liza Bernstein gives some insight into what will be discussed during "A Window Into Rare," our #RareDiseaseDay online panel discussion on Feb. 28. Register for this live event here: https://bit.ly/Bionews_RegisterNow #AWindowIntoRare #BioNews

A Window Into Rare - Rare Disease Day

"I have an understanding of what it feels like to feel isolated and erased": Patient advocate Liza Bernstein is hosting "A Window Into Rare," our #RareDiseaseDay panel discussion on Feb. 28. Register for this live event here: https://bit.ly/Bionews_RegisterNow #AWindowIntoRare #BioNews

We Are Rare. We are BioNews.

Batten Disease News is part of the BioNews family, and 60% of us behind the scenes live with a rare condition. This is why we strive to provide you with trustworthy content, meaningful resources and a safe space. #WeAreRare. We are #BioNews. Learn more: https://bionews.com #RareDiseases #BattenDiseaseNews #BattenDisease #Batten #LivingwithBattenDisease #BattenDiseaseCommunity

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