Increasing Rare Disease Treatment Research


Increasing Rare Disease Treatment Research

August 21, 2019  |  Best Practice

1. Expand Institutional Incentives

The expansion of institutional incentives, such as priority review vouchers, can be utilized to increase the number of studies and research occurring for rare diseases.


2. Communicate Between the Public and Private Spheres

To adequately address the issue of limited rare disease treatment research, there must be constant and cooperative communication between the public and private spheres as well as with patient advocacy groups.


3. Address the “Trial to Shelf” Gap

The gap between clinical trials and the shelving of these potentially life-saving drugs must be addressed to improve rare disease treatment options. 


To learn more best practices, attend an upcoming CHI educational event.



Lindsay Moore-Fields

Healthcare Analyst at CHI




Joseph Gaspero is the CEO and Co-Founder of CHI. He is a healthcare executive, strategist, and researcher. He co-founded CHI in 2009 to be an independent, objective, and interdisciplinary research and education institute for healthcare. Joseph leads CHI’s research and education initiatives focusing on including patient-driven healthcare, patient engagement, clinical trials, drug pricing, and other pressing healthcare issues. He sets and executes CHI’s strategy, devises marketing tactics, leads fundraising efforts, and manages CHI’s Management team. Joseph is passionate and committed to making healthcare and our world a better place. His leadership stems from a wide array of experiences, including founding and operating several non-profit and for-profit organizations, serving in the U.S. Air Force in support of 2 foreign wars, and deriving expertise from time spent in industries such as healthcare, financial services, and marketing. Joseph’s skills include strategy, management, entrepreneurship, healthcare, clinical trials, diversity & inclusion, life sciences, research, marketing, and finance. He has lived in six countries, traveled to over 30 more, and speaks 3 languages, all which help him view business strategy through the prism of a global, interconnected 21st century. Joseph has a B.S. in Finance from the University of Illinois at Chicago. When he’s not immersed in his work at CHI, he spends his time snowboarding backcountry, skydiving, mountain biking, volunteering, engaging in MMA, and rock climbing.