The 40% is a 501(c)(3) nonprofit organization that is focused on solving the most pressing issue facing rare disease patient organizations — funding for research. Rather than providing small conference and patient support grants, The 40% aims to make large, sustained research grants available so that patient organizations can really drive research and find cures for all rare diseases.
40% of families have a loved one affected by a "rare" disease
Shocking, but true! According to the National Institutes of Health (NIH), there are over 7000 rare diseases, and 30 million Americans are affected. This translates to about 10% of the population and 40% of families in the U.S.
Patient families struggle to fund medical research
Rare disease patients and their families get no cure but steep medical bills. Although rare diseases can strike anyone, the affected families are expected to bear the burden of biomedical research, regardless of how financially exhausted they are. Pharmaceutical companies won’t help them. The patients and their families feel obligated to donate to research, hoping that someday, someone will create a cure. The good news is that their grassroots efforts — through the leadership and management of their patient organizations — can work! Several patient organizations have shown that. These organizations have developed new therapies and improved care for their particular diseases. However, most organizations struggle to raise enough money to replicate this success.
The 40% helps patient organizations drive research
The 40% is a nonprofit organization established by a group of innovative biotechnology entrepreneurs, venture philanthropists, and leaders of successful patient organizations who are passionate about curing rare diseases. We believe that patient organizations are the key to finding cures for rare diseases and recognize that the biggest problem facing patient organizations is the lack of sufficient funding. Our aim is to leverage the commonality of all rare diseases to advocate and fundraise for rare diseases collectively and make large and sustained research grants available to patient organizations so that cures for potentially thousands of rare diseases can be found in the next 5 to 10 years.