Updates

April 15, 2021April 15, 2021
EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through ... Read more
April 8, 2021April 8, 2021
Maypole Project Opens Counseling and Activities for Batten Families in UK

Families of a child with Batten disease in the U.K. are welcome take part in counseling and other wellness services being offered at no cost by the Maypole ... Read more
April 1, 2021April 1, 2021
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how ... Read more
March 25, 2021March 31, 2021
Neurogene Workshop Seeks Families Affected by CLN5

Editor’s note: This story was updated March 30, 2021 to clarify that Neurogene is hosting videoconferences workshops for families in any country. Neurogene, which is ... Read more
March 17, 2021March 15, 2021
Soon I’ll Be Racing for Real Again

My sister, Taylor, was diagnosed with CLN1 disease on a hot summer day in 2006, during the “Dark Ages” of Batten disease research, before we ... Read more

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July 20, 2017July 20, 2017

North Carolina’s Indo Jax Surf Charities Helps Kids With Batten Disease, Other Special Needs

News

A small North Carolina nonprofit organization, Indo Jax Surf Charities, has recently gained attention for its set of free programs to help children with Batten disease and other special needs build self-esteem. Since launching these programs, Indo Jax has been featured in ... Read more

Updates

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

Maypole Project Opens Counseling and Activities for Batten Families in UK

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Neurogene Workshop Seeks Families Affected by CLN5

Soon I’ll Be Racing for Real Again

Subscribe to our mailing list

Actelion to Help Develop BBDF-101 for Juvenile Batten Disease

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Report: Atypical CLN2 Starts With Seizures, Language and Behavioral Problems

Scientist Wins Grant to Study CLN6 Batten, Advance Early Trials

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Vision Loss in Juvenile Batten May Be Due to ‘Maintenance’ Failure

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

CLN3 Gene Therapy Showing Safety, Possible Efficacy in Trial, Amicus Reports

My Sister Is Gone, but She’s Still Teaching Me to Live in the Moment

Gene Therapy Directly to Brain Helps Preserve Vision in CLN6 Mouse Model

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Analysis of Proteins in Urine Identifies Potential Disease Biomarkers

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

FDA Issues Guidance on Developing Rare Disease Treatments

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Vision Loss More Severe in Juvenile Batten Than in Stargardt, Study Says

NORD’s Caregiver Respite Program Continues Through Pandemic

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Taysha, Catalent Partner to Advance Gene Therapies for Batten, Other Disorders

Cannabis Oil as Add-on Therapy Seen to Ease Severe Seizures in CLN6 Batten

Walking the Path From Here to There

Enrollment Begins in Natural History Study of 2 Batten Disease Subtypes

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

Juvenile Batten Disease Treatment BBDF-101 Earns FDA’s OK for Pre-Clinical Plan

North Carolina’s Indo Jax Surf Charities Helps Kids With Batten Disease, Other Special Needs