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report
IBD Plexus: Partnering to Accelerate Science
IBD Plexus is a research and information exchange platform whose goal is to accelerate research and
transform the care of patients with inflammatory bowel disease (IBD).
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report
Neurofibromatosis Preclinical Initiatives (NFPI)
The NF Preclinical Initiative (NFPI) represents one of the Children’s Tumor Foundation’s groundbrea
king models of scientific collaboration.
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report
University-Foundation Relations: From Transactional to Transformative Partnerships
In biomedical research, both nonprofit disease foundations and academic research institutions are c
ommitted to translating research into effective therapies for patients.
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report
Venture Philanthropy Legal Report: The Importance of An Interruption License
This report is one in a series on legal issues of interest to non-profit organizations engaged in o
r thinking about Venture Philanthropy work. It discusses the beginnings of Venture Philanthropy in drug development, the importance of an Interruptio
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report
The Value of Building an Interdisciplinary Scientific Workforce — A Call to Philanthropy
The challenges that science strives to solve are increasingly complex, and making progress toward t
hem requires constant innovation and the expertise of multiple fields of study.
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report
Next Generation Prevention - A Giving Smarter Guide
Precision health focuses on improving overall health and preventing disease, rather than treating d
isease.
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report
Glioblastoma Multiforme: A Giving Smarter Guide to Accelerating Research Progress
Glioblastoma Multiforme (GBM) is an aggressive malignant brain tumor involving glial cells of the b
rain. At the time of this report, nearly 15,000 people were diagnosed with GBM each year in the United States and Europe.
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report
Childhood Brain Cancer: A Giving Smarter Guide
Pediatric brain cancer accounts for 16 percent of all new childhood cancer diagnoses, making it one
of the most common cancer diagnoses in children and adolescents. It is also the leading cause of cancer death within this age group.
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video
Venture Philanthropy in Action: A Case Study of EB Research Partnership and ProQR
How are nonprofit organizations leveraging venture philanthropy to accelerate the development of t
reatments and cures?
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video
Technology Enabling Decentralized Trials, Novel Endpoints, Real World Data
New technologies and approaches to collection and use of patient data have the potential to revolu
tionize clinical research. How can patient organizations support this movement? What are potential pitfalls to watch out for?
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video
Master Protocols, Adaptive Designs, and Bayesian Statistics – Oh My
Master Protocols, Adaptive Designs, and Bayesian Statistics: These innovative trial approaches are
sometimes described as being “patient-centric.” Are they? What are the challenges and opportunities for patient groups to support them?
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video
Opportunities for Patient Group Engagement in Clinical Trials
What is the range of opportunities for patient foundations to support more rapid and effective cli
nical research, through preference studies and other patient insights, trial design and networks, recruitment and retention?
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