- Beyond Batten Disease Foundation - https://beyondbatten.org -

Resources

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CLN3 Research Tools and Resources

View/Download the PDF [1]

Grant Writing Resources

The Grant Application Writer’s Workbook [2]
Written by: Stephen W. Russell and David C. Morrison

Writing for Biomedical Publication [3]
Written by: David C. Morrison, Christopher J. Papasian and Stephen W. Russell

Optimize Science [4]
A team of PhDs and MDs who advise scientists, foundations, and startup companies on strategic planning, grants, and papers.

Career Development

Making the Right Moves: A Practical Guide to Scientific Management for Postdocs and New Faculty [5]
Presented by: Burroughs Wellcome Fund and Howard Hughes Medical Institute

On Being a Scientist: A Guide to Responsible Conduct in Research [6]
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

Beachy, S.H., Johnson, S.G., Olson, S. and A.C. Berger. (2014) Drug Repurposing and Repositioning – Workshop Summary. Washington D.C.: National Academies Press. [7]

Gliklich, R.E., Dreyer, N.A., Leavy, M.B. (2014) Registries for Evaluating Patient Outcomes: A User’s Guide [Internet]. 3rd edition. Rockville (MD): Agency for Healthcare Research and Quality (US). [8]

Hernberg-Ståhl, E. and M. Reljanović (2013). Orphan Drugs: Understanding the Rare Disease Market and its Dynamics, 1st edition. Cambridge: Woodhead Publishing Limited.  [9]

Institute of Medicine. (2010) Rare Diseases and Orphan Products: Accelerating Research and Development 1st Edition, Washington (DC):National Academies Press. [10]

Mole, S. and R.E. Williams. (2013) Neuronal Ceroid-Lipofuscinoses in GeneReviews®. Seattle (WA): University of Washington, Seattle.  [11]

Mole, S. Williams, R. and H. Goebel. (2011) The Neuronal Ceroid Lipofusinoses (Batten Disease) (2 ed.) Oxford: Oxford University Press.  [12]

Reilly, P.R. (2015) Orphan: The Quest to Save Children with Rare Genetic Disorders. Cold Spring Harbor, New York: Cold Spring Harbor Laboratory Press.  [13]

Sireau N. (2013) Rare Diseases: Challenges and Opportunities for Social Entrepreneurs (1st Ed) Austin TX: Greenleaf Publishing. [14]

Publications

Designing a plan for drug discovery in rare pediatric neurodegenerative disease [15]
Written by: Danielle Kerkovich, PhD and Amy Drew, MA

BBDF strategy [16][/vc_column_text][/vc_column][/vc_row]