BBDF Publications

Designing a plan for drug discovery in rare pediatric neurodegenerative disease
Written by: Danielle Kerkovich, PhD and Amy Drew, MA

BBDF strategy

ADDF Access

Beyond Batten Disease Foundation, together with the Bright Focus Foundation, Alzheimer’s Drug Discovery Foundation, Children’s Tumor Foundation and the Alzheimer’s Association came together to create ADDF ACCESS. ADDF Access, powered by OnDeckBiotech, is a curated database of contract research organizations (CROs) with specialized expertise in drug discovery for neurodegenerative diseases. ADDF ACCESS additionally provides educational resources and guidance on the process of selecting and managing a CRO contract.

Grant Writing

The Grant Application Writer’s Workbook – NIH
Written by: Stephen W. Russell and David C. Morrison


Writing for Biomedical Publication
Written by: David C. Morrison, Christopher J. Papasian and Stephen W. Russell

Career Development

Making the Right Moves: A Practical Guide to Scientific Management for Postdocs and New Faculty
Presented by: Burroughs Wellcome Fund and Howard Hughes Medical Institute

On Being a Scientist: A Guide to Responsible Conduct in Research
Presented by: Committee on Science, Engineering, and Public Policy; Institute of Medicine; Policy and Global Affairs; National Academy of Sciences; National Academy of Engineering

Rare Disease and Orphan Drugs

Rare Disease and Orphan Products: Accelerating Research and Development 
Written by: Committee on Accelerating Rate Diseases Research and Orphan Product Development, Board on Health Sciences Policy, and Institute of Medicine

Orphan Drugs: Understanding the Rare Disease Market and its Dynamics (Woodhead Publishing Series in Biomedicine)
Written by: Elizabeth Hernberg-Stahl and Miroslav Reljanovic

Orphan: The Quest to Save Children with Rare Genetic Disorders
Written by: Philip R. Reilly, MD, JD

The Neuronal Ceroid Lipofuscinoses (Batten Disease) (Contemporary Neurology) 
Written by: Sara Mole, Ruth Williams, and Hans Goebel

Institute of Medicine Drug Repurposing Report 2014
Written by: Sarah H. Beachy, Samuel G. Johnson, Steve Olson and Adam C. Berger

Rare Diseases: Challenges and Opportunities for Social Entrepreneurs
Edited by: Nicolas Sireau

TEDMED: One more reason to get a good night’s sleep
Given by: Jeff Iliff