CTOs on the Move

National Organization for Rare Disorders

www.rarediseases.org

 
The National Organization for Rare Disorders, a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD, along with its 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient support services. NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, medical students, and companies developing orphan products. NORD also works closely with many government agencies, most notably the National Institutes of Health (NIH) and ...
  • Number of Employees: 25-100
  • Annual Revenue: $1-10 Million

Executives

Name Title Contact Details
Prashant Goel
Vice President of Information Technology Profile

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Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis, a rare, fatal disease affecting 70k worldwide. We are a nonprofit, donor-supported organization that has raised and invested hundreds of millions of dollars to help develop cystic fibrosis therapies that have changed the lives of people with this disease. Nearly every CF medicine available today was made possible because of Foundation support, including Kalydeco, a medicine that Forbes magazine called “The Most Important Drug of 2012.” The Foundation`s pioneering business model has been featured in two Harvard Business School case studies and by publications such as Forbes, The Wall Street Journal, The New Yorker, and Bloomberg Businessweek. Through the Foundation’s efforts, the life expectancy of a child with CF has doubled in the last 30 years. Based in Bethesda, Md., the Foundation created, funds and accredits a national network of cystic fibrosis care centers that have been recognized by the National Institutes of Health as a model of care for a chronic disease. The Cystic Fibrosis Foundation is one of the most efficient organizations of its kind and is an accredited charity of the Better Business Bureau`s Wise Giving Alliance.