Marianne Clancy
Marianne Clancy
About
Detail
CEO Cure HHT/ Managing Director of Research and Medical Strategic Partnerships
Maine, United States
As CEO and Managing Director, I have considerable experience leading a global organization of patients affected with an uncommon vascular disease affecting 1.5MM people.Over the last 2 decades, my collaborations with the Board of Directors, scientific and medical research community, biotech, pharma and medical device partnerships have resulted in significant advancements.
My responsibilities involve setting strategies for mission critical projects to advance awareness, physician & patient education, increasing access to care, facilitating partnerships with industry, and advancing mechanistic & clinical research projects. The collaborations fostered with the CDC, NIH, DOD and FDA resulted in launching specific initiatives. These collaborations enabled our community to become active partners within the research community.
Through growth of fundraising and philanthropy, I led the launch of our first research funding program. We have leveraged $2 MM investments in seed grants to over $ 56MM in research grants from the NIH, FDA, DOD & European funding agencies.
The Cure HHT Treatment Centers of Multidisciplinary Excellence have grown to 32 in North America during my tenure and 25 globally. It has been a model for other uncommon disease advocacy organizations.
Through my partnership with our scientific leaders, I was able to attain release of the patents of 2 HHT genes in 2004 leading to the availability of genetic testing in North America: Genetics in Medicine • Volume 12, Number 11, November 2010. We have created a patient-centered research network and expanded capacity as a Chan Zuckerberg Rare as One Initiative. Under my tenure, we have sponsored and participated in two HHT International Guidelines for Diagnostic, Treatment and Management conferences resulting in publications in high impact journals. Our continued sponsorship and growth of the research community continues through International Reesarch Conrerences held biennually.
I have been able to utilize my experience gained throughout my career early on in academic education, corporate responsibility and as a consultant in the Pharmaceutical research arena into producing strong results in the non-profit sector
My responsibilities involve setting strategies for mission critical projects to advance awareness, physician & patient education, increasing access to care, facilitating partnerships with industry, and advancing mechanistic & clinical research projects. The collaborations fostered with the CDC, NIH, DOD and FDA resulted in launching specific initiatives. These collaborations enabled our community to become active partners within the research community.
Through growth of fundraising and philanthropy, I led the launch of our first research funding program. We have leveraged $2 MM investments in seed grants to over $ 56MM in research grants from the NIH, FDA, DOD & European funding agencies.
The Cure HHT Treatment Centers of Multidisciplinary Excellence have grown to 32 in North America during my tenure and 25 globally. It has been a model for other uncommon disease advocacy organizations.
Through my partnership with our scientific leaders, I was able to attain release of the patents of 2 HHT genes in 2004 leading to the availability of genetic testing in North America: Genetics in Medicine • Volume 12, Number 11, November 2010. We have created a patient-centered research network and expanded capacity as a Chan Zuckerberg Rare as One Initiative. Under my tenure, we have sponsored and participated in two HHT International Guidelines for Diagnostic, Treatment and Management conferences resulting in publications in high impact journals. Our continued sponsorship and growth of the research community continues through International Reesarch Conrerences held biennually.
I have been able to utilize my experience gained throughout my career early on in academic education, corporate responsibility and as a consultant in the Pharmaceutical research arena into producing strong results in the non-profit sector
