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A Plea to Philanthropists on Behalf of Rare Disease Patients

Health equity should include those who live with rare conditions, says Peter Saltonstall, President and CEO of the National Organization for Rare Disorders, in an opinion piece published in the Chronicle of Philanthropy.

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Any one rare disease affects less than .06 % of the U.S population. But because there are an estimated 7,000 rare conditions, they impact millions of U.S. patients and their families.

People living with rare diseases face inequities in accessing diagnosis, care and treatments, wrote Peter Saltonstall, President and Chief Executive Officer of the National Organization for Rare Disorders (NORD), in an op-ed article for The Chronicle of Philanthropy.

He called upon philanthropists to broaden their definition of health equity.

“In the face of these challenges, philanthropy has an opportunity – and an obligation – to expand its definition of health equity to include the one in 10 Americans and their families who are living with rare diseases,” Saltonstall wrote.

Read more of Saltonstall’s op-ed in The Chronicle of Philanthropy.