The 40% is a 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
As affected families, we get no cure but medical bills. Although rare diseases can strike anyone, we are expected to bear the burden of biomedical research, regardless of how financially exhausted we are. Pharmaceutical companies won’t help us. We feel obligated to donate to research, hoping that someday, someone will create a cure. The good news is that our efforts can work! Several patient organizations have shown that. These organizations have developed new therapies and improved care for their particular diseases. However, most organizations cannot raise enough money to replicate the success.
The NIH has the funds!
The NIH has an annual budget of $42 billion for medical research. However, the sheer number of rare diseases makes it infeasible for the NIH (or any institution) to coordinate research for each disease. Without coordination, many essential projects are missing, while others are duplicative. This has resulted in a lack of effective therapy for over 95% of rare diseases.
Empower patient organizations to drive research!
If only 3% of the NIH budget is paid out as research grants to rare disease patient organizations, millions of dollars will be available for each organization every year. The sustained funding will lift the financial burden off the patient families, and allow patient organizations to drive research on their rare diseases. This will result in new treatments for thousands of rare diseases in 5 to 10 years. How wonderful would that be!?
Join our efforts to help your patient organization find a cure for you!
Simply click on the “Action” button below to tell your representatives to create a new NIH grant for rare disease patient organizations. The future of your loved one depends on it!
