November 25, 2014

Lessons From Disease Advocacy Organizations

By Richard Sharp, Ph.D.


Building A Legacy


The Cystic Fibrosis Foundation (CFF) recently announced that through the sale of the Foundation’s royalty rights to new therapies developed in collaboration with Vertex Pharmaceuticals Inc., they received $3.3 billion dollars.

This is an unprecedented amount of money to be raised by a disease advocacy organization through this type of transaction and highlights the success of the CFF over the past decade. Its efforts to develop new models of venture philanthropy in medical research showcase the power of patients and families partnering in new ways with medical researchers and pharmaceutical companies.

“This is a transformational moment for the Foundation and the entire CF community,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “These new resources will allow us to supercharge our efforts to help all people with CF live long, healthy and fulfilling lives today and work to find a cure.”

The Foundation plans to use these proceeds to fund new research initiatives and to increase resources available to help people with CF and their families manage health care costs.  

When many people think of disease advocacy organizations, the image that comes to mind is that of a dedicated family organizing grassroots fund raising events. Our research shows that the face of disease advocacy is much more complex, as many of these organizations are quite large and engage in all aspects of biomedical research; from study design, to subject recruitment and drug development.

With their unique combination of focused patient advocacy and openness to innovative research partnerships, organizations like the CFF have much to teach us all.


Tags: Bioethics, center for individualized medicine, CFF, Cystic Fibrosis Foundation, DNA, DNA Sequencing, dna test, DNA Testing, gene sequencing, Genetics, Genomic, genomic medicine, genomics, individualized medicine, IndividualizedMedicine, mayo clinic, personal genomics, personalized care, personalized medicine, predictive medicine, Richard Sharp, Uncategorized, Vertex Pharmaceuticals, whole genome sequencing

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