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Oct 29, 2019 · BDSRA exists for those affected by Batten Disease. We are dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action.
https://bdsra.org/patient-and-family-support/support-for-batten-siblings/
Since the founding of BDSRA in 1987 by parents of children with Batten disease, providing programs, services and support to families has been a central focus of the mission of the organization. Currently, BDSRA is the only family support organization in North America dedicated to serving newly diagnosed families…
https://bdsra.org/family-profiles/
That changed abruptly in 2011, when the family received the devastating news that Hannah had juvenile Batten disease. In the years since Hannah’s diagnosis, the Rodgers’ have faced enormous challenges in seeking services and providing the best environment they can create for their children.
https://bdsra.org/what-is-batten-disease/
What is Batten Disease? Batten disease, or Neuronal Ceroid Lipofuscinosis (NCL), is a family of rare diseases caused by autosomal recessive genetic mutations resulting in the body. These genetic mutations disrupt the cells' ability to dispose of wastes. Cells are thrown out of balance with the build-up of proteins and lipids (fats).
https://www.curebatten.org/
The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease was founded to save the lives of all children impacted by Batten Disease by accelerating the research for a cure and providing support to patients and their families.
https://beyondbatten.org/family-stories/
The Luke and Rachel Batten Foundation was formed in 2001 to honor Luke and Rachel Watson. Luke was born September 17, 1992 a healthy happy baby. Sixteen months later on January 28, 1994 Rachel arrived. The Watson family was complete. Luke was diagnosed with juvenile Batten disease in …
http://battens.org.au/resources
Our quartlery Newsletter includes information on up coming family events, recent publications on Batten disease, news from the Medical and Scientific Board and information about family support. To be included on the quarterly Newsletter mailing list, please email [email protected] with your name, email address, and contact number.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Batten-Disease-Fact-Sheet
Following a review of the person’s individual and family medical history and a neurological exam, several tests can be used to diagnose Batten disease and other neuronal ceroid lipofuscinoses. Currently, most diagnoses of Batten disease are made by genetic testing.
http://www.bdfa-uk.org.uk/about-batten-disease/
For more information, please click here for the support section of our website or contact the BDFA Support Officer: [email protected] or 0800 046 9832 Please donate to the Batten Disease Family Association
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