IRSF Joins Standard of Excellence Program

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The International Rett Syndrome Foundation (IRSF), an organization focused on accelerating research to treat and cure Rett syndrome, has been appointed to the National Health Council (NHC) Standard of Excellence program.

“This is a great honor. It recognizes IRSF’s leadership in advancing treatments and cures for patients as well as our success adhering to the highest degree of stewardship, accountability, and transparency,” Melissa Kennedy, CEO of the IRSF, said in a press release.

The NHC was founded by and for patient organizations a century ago, with the mission of providing a united voice for millions of people in the chronic disease and disability communities. Its goal is to drive patient-centered policies in the U.S., to ensure that every person has access to quality, affordable healthcare that allows them to achieve the best health-related outcomes.

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The NHC’s membership is composed of leading patient advocacy organizations in the U.S., which help to control the NHC’s governance and policy-making process. Membership also includes other organizations in the health sector, including nonprofits, other communities (families, researchers, caregivers), and businesses.

Patient advocacy organizations that join the NHC have to adhere to the NHC’s Standards of Excellence program. This includes a total of 38 standards that are meant to hold member organizations to “the highest standards of accountability and ethical practice,” according to the NHC’s website.

The 38 standards cover a variety of areas related to running a patient advocacy organization, such as best practices for governance and human resources. Standards also include requirements on programs, fundraising, finances, and more. Among the 38 standards, there are 11 minimum standards that every patient advocacy organization has to meet before applying for membership.

IRSF joins more than 140 organizations that are part of the NHC through the Standards of Excellence program. The IRSF’s participation in the NHC program is an “incredibly valuable opportunity,” according to Kennedy.

“It increases the visibility [of] the whole Rett community. It helps us ensure that our families’ cause is heard in national discussions on patient engagement, reducing health care costs, and ensuring that the health care system provides equitable, inclusive, and high-value care,” she said.