Let’s blow your mind for a minute.
There are approximately 7,000 different types of rare diseases, and more being discovered every day.
According to Global Genes, there are 30-million people in the United States living with rare diseases, which equates to 10-percent of the U.S. population.
That’s about 4 times the size everyone living in New York City!
And if all of the people with rare diseases lived in one country, it would be the world’s third most populous country.
That’s a lot of people.
But even though rare diseases are this prevalent, there have been a lack of financial investments put toward research in the past, leaving many people untreated and doctors struggling to understand the symptoms.
Enter “venture philanthropy.”
Introduced by venture capitalists who felt the traditional philanthropy model was deeply flawed, the concept uses venture dollars to empower patient advocacy efforts and to achieve philanthropic goals. You can think of them as the Robin Hood’s for patients.
With venture philanthropy, patient-relevant outcomes are more quickly achieved. Its singular focus is getting promising therapies from the laboratory bench to the patients as quickly and efficiently as possible—bringing hope and results to patients and families who suffer from neglected diseases.
For every drug that receives Federal Drug and Administration (FDA) approval, 10,000 fail, according to the National Institute of Health (NIH). That’s plenty of reason for additional funding and an undivided attention toward the creation of rare disease treatments.
But what makes it the future of medicine?
Well, generally it mimics the way that venture capitalists approach business. With venture philanthropy, donors are looking at their donation similar to an investment, and want some kind of metric for performance or efficiency.
The “metric for performance or efficiency” is what keeps close eyes on the process. Companies are providing early seed capital for scientific proof of concept that is too risky for both public and private funders to support—thus, they want results.
Plus, there are big supporters, including Michael J. Fox, a patient and advocate of Parkinson’s disease.
“The tough truth is that the drug development funding system is broken where the risk is highest. Venture philanthropy is a tool for advancing research that will transform lives,” he said. “It’s the human return, not the financial return, upon which we must focus.”
These kinds of investments are the investments that demand results. Venture philanthropy allows for research and development in medicine, and will continue to help patients—especially those with rare diseases.
Share your thoughts on the importance of using unorthodox ways to raise money and awareness for rare diseases. Speaking of interesting ways to raise money, check out this latest research initiative in conjunction with CysticLife. Don’t forget to share this post!
