Rare Sibling Stories Looking for Stories!

August 15, 2023
News

Rare Sibling Stories is looking for siblings to highlight on their platforms! They would love to feature siblings of individuals with Batten disease. Siblings (any age) just need to fill out a short survey with this link: https://forms.gle/SbogDffzfphoAFjj7

They created Rare Sibling Stories to provide a space for siblings of individuals with rare diseases to share their stories and connect with others like themselves. Rare Sibling Stories is gathering information from siblings to highlight on the Rare Sibling Stories website and social media!

NORD’s Batten Disease Patient Assistance Program

July 17, 2023
News

Having a rare disease is difficult. Adding in the complex care required to treat or manage that disease and figuring out how to pay for it makes a rare diagnosis even harder. NORD’s Batten Disease Patient Assistance Program offers eligible individuals diagnosed with Batten Disease financial support to pay for out-of-pocket healthcare costs that are directly related to the care and treatment of Batten. These Patient Assistance Programs for individuals diagnosed with Batten disease have been expanded. Eligible individuals may now apply for financial support with health insurance premiums and copay expenses as well as Emergency Relief (critical, non-medical needs). Eva’s Butterfly Wishes for rare children may also be available. Learn more below.

 

PREMIUM & COPAY PROGRAM

 

EVA’S BUTTERFLY WISHES® FOR RARE CHILDREN

 

EMERGENCY RELIEF PROGRAM

 

BBDF Grants $60,000 Over 3-Years to Support Ineka Whiteman, Ph.D., Head of Research and Medical Affairs

July 17, 2023
Research

BBDF grants $60,000 over 3-years to the BDSRA Foundation to support Ineka Whiteman, Ph.D. to serve as the Head of Research and Medical Affairs. With this support, Dr. Whiteman is able to focus on Batten research full-time. In addition, Ineka serves as a scientific consultant to BBDF and the Head of Research and Medical Affairs for BDSRA Australia. Her leadership brings a more cohesive approach and fosters greater partnership and collaboration across all CLN3 initiatives. Click here to read her bio.

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