21st Century Cures Act as it Impacts the Rare Disease Community
(Kelly Austin, PhD, Sandra K. Heibel, PhD, and Marlene E. Haffner, MD, MPH)
National Institute of Health (NIH),
Office of Rare Diseases
National Organization for Rare Diseases (NORD)
US Food and Drug Administration / Orphan Drug Act
2009 interview with
Marlene E. Haffner, MD, MPH
2006 Nature Publishing
Group article
International Conference
on Rare Diseases
"FDA works to speed up
'orphan drug' process"
by Lorna Benson,
Minnesota Public Radio (see below)
2003 to Present -
2014 -
2014 -
2009 -
2002 -
Lifetime Achievement Award from EURORDIS – European Organization for Rare Disorders for long standing commitments and expertise in rare diseases and orphan drug development
Vision and Policy Award – Canadian Organization for Rare Diseases Canadian Organization for Rare Diseases for commitment to and assistance in the development and forward thinking in the development of Canadian Orphan Drug policies.
Special Recognition Award – American Academy of Pharmaceutical Physicians for Outstanding Contribution to Pharmaceutical Medicine.
2016 to Present -
2015 to Present -
2014 to Present -
2012 to Present -
2012 to Present -
2009 to 2010 -
2009 to Present -
2010 to 2015 -
2008 to Present -
2007 to 2015 -
2010 to Present -
2007 to Present -
2011 to 2015 -
2011 to Present -
2008 to Present -
Orphan Disease Center, University of Pennsylvania – External Advisory Committee
BioPontis Alliance for Rare Disease – Board of Directors
DeNovaMed - Board of Directors, developing products for recalcitrant skin diseases
BioBlast – Board of Directors, devoted to the development of drugs for rare diseases
Journal of Rare Disorders – Editorial Board
Kakkis Everyday Life Foundation – Scientific Board of Advisors
Keck Graduate Institute, Center for Rare Disease Therapies – Board of Advisors
Neuroendocrine Tumor Research Foundation - Board of Scientific Advisors
Neuroendocrine Tumors Patient Registry – Advisory Board
Health Policy Directions in Stem Cell Research and Treatment Committee, University of Alberta, Canada – Committee Member
ICORD (International Conference on Rare Diseases) – Board of Directors
2008 to 2009 -
2005 to Present -
1981 to Present -
1973 to Present -
1972 to 2015 -