Batten Disease News

June 9, 2022June 9, 2022

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in ... Read more

June 2, 2022June 2, 2022

Supporters Set to Mark International Batten Disease Awareness Day

Batten Disease News

From participating in a virtual 5k to sharing personal stories, supporters are set to mark International Batten Disease Awareness Day, observed annually on June 9. The goal of the global ... Read more

May 26, 2022May 26, 2022

New Study Highlights Emotional, Behavioral Challenges Due to Batten

Batten Disease News

For children with Batten disease, some behavioral and emotional challenges are a response to difficulties brought on by the inherited disorder, a new study highlights. While the researchers emphasized that ... Read more

May 19, 2022May 19, 2022

Sheep Chimera Study Points Up Role of Brain Inflammation in Batten

Batten Disease News

An inflammatory environment driven by brain cells called microglia may act to prevent the brain from repairing itself in Batten disease, according to a new study done in sheep chimeras. ... Read more

May 12, 2022May 12, 2022

Seizures Were Only Symptom of Juvenile Batten in Girl, 13: Report

Batten Disease News

A 13-year-old girl experiencing unexplained seizures and no other apparent symptoms was ultimately diagnosed with juvenile Batten disease, according to a recent report. This “is probably the first case report ... Read more

May 5, 2022May 5, 2022

BDSRA Webinar Focuses on Latest Treatments, Research

Batten Disease News

The Batten Disease Support and Research Association (BDSRA) will present a special international edition of its virtual Ask-An-Expert series today. The webinar will explore the latest in treatment development for ... Read more

April 29, 2022April 29, 2022

Organizations Rally to Help Ukrainian Rare Disease Patients

Batten Disease News

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ... Read more

April 28, 2022April 28, 2022

Retinal Damage May Differ Between CLN5, CLN6 Disease: Sheep Study

Batten Disease News

The layers of the retina — the part of the eye that’s damaged in Batten disease — are differently affected and show a distinct progression between naturally occurring sheep models ... Read more

April 21, 2022April 21, 2022

Europe Awaits Proposed New Framework for Sharing Health Data

Batten Disease News

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health ... Read more

April 14, 2022April 14, 2022

Parents of Juvenile Batten Children Find Value in Small Moments of Joy

Batten Disease News

Parents of children with juvenile Batten disease face many challenges, but may find value in small moments of joy, a new study highlights. Juvenile Batten, also called CLN3 disease, is ... Read more

April 14, 2022April 14, 2022

Telehealth Added to Latest Digital-friendly NORD State Report Card

Batten Disease News, COVID-19 News

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues ... Read more

April 7, 2022April 7, 2022

CLN7 Is a Chloride Channel, Opens Door to New Therapies, Study Finds

Batten Disease News

The CLN7 protein that is faulty in a form of late-infantile Batten disease is a chloride channel that regulates the function of lysosomes, the recycling compartment of the cell, a ... Read more

March 31, 2022March 31, 2022

Genetic Testing Allows Diagnosis of CLN2, Other Seizure Disorders

Batten Disease News

Genetic testing enabled a diagnosis of ceroid lipofuscinosis type 2 disease (CLN2) in six young children with symptoms that included seizures, motor disturbances, and language delays, while 37 other children ... Read more

March 25, 2022March 25, 2022

Increased Education Crucial to Improving Rare Disease Care, Survey Finds

Batten Disease News

Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over ... Read more

March 24, 2022March 24, 2022

CLN5 Mutations Found to Disrupt ‘Recycling Centers’ in Nerve Cells

Batten Disease News

Mutations in the gene CLN5, which cause a form of late infantile Batten disease, disrupt the function and movement of cellular compartments called lysosomes, the so-called “recycling centers” of cells. That’s ... Read more