NORD Commends PhRMA for Adopting Principles for Interaction With Patient Organizations

Guidelines Emphasize Respecting the Values and Independence of Patient Organizations
Sep 28, 2012 5:50 AM ET
Press Release

WASHINGTON, Sept. 28, 2012 / 3BL Media / PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) today issued a statement commending the Pharmaceutical Research and Manufacturers of America (PhRMA) for adopting principles to guide the interaction between pharmaceutical companies and patient organizations.


"We applaud this action and appreciate the respect it demonstrates for the desire of both pharmaceutical companies and patient organizations to maintain appropriate controls over their interaction," said Peter L. Saltonstall, NORD president and CEO.  "Pharmaceutical companies and patient organizations share the same mission – to improve the lives of patients.  These principles will help them work together in appropriate ways to fulfill that mission."

As the leading nonprofit organization representing the 30 million Americans with rare diseases, NORD ( represents the shared interests of all rare disease patient organizations.  In that role, it provides mentoring and other services to encourage best practices.

The principles have been posted on the PhRMA website and are being distributed to all PhRMA member companies.  Among other things, they state that: 

  • All interactions with patient organizations must be consistent with the patient organization's mission and adhere to high ethical standards.
  • Companies that provide financial support or in-kind contributions to patient organizations should have in place written documentation setting out the nature of support, including the purpose of any activity and its funding.
  • Companies may provide financial support for patient organization meetings or other activities provided that the primary purpose of the activity is professional, educational, or scientific in nature, or otherwise supports the mission of the patient organization.

NORD was established in 1983 to serve as an umbrella organization for all rare disease patients and patient organizations.  As such, it works closely with partners in government, industry, academia, and the investment community.

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