Sep. 29, 2016
Posted by Jennifer Huron
Washington, D.C., September 29, 2016 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement from President and CEO Peter L. Saltonstall following President Obama’s signature of the Continuing Resolution today.
“On behalf of the 30 million Americans with rare diseases, more than half of whom are children, the National Organization for Rare Disorders (NORD) applauds the President, House of Representatives, and the Senate for taking critical and much-needed action in the past week to pass legislation to fight the Zika virus.
“Today President Obama signed the Continuing Resolution passed by the House of Representatives yesterday that will provide $1.1 billion in federal funding that will help protect children and families from this virus that can cause the rare disease microcephaly and various other birth defects.
“NORD is proud to have participated in coalition led by the March of Dimes and to have worked with other patient advocacy groups since mid-March to educate Congress about the dangers of Zika and urge for the passage of federal funding to combat the virus. Efforts included frequent meetings with Congressional offices, sign-on letters, media, email, and social media campaigns.
“NORD is grateful to our supporters who joined us in these advocacy efforts and sent messages to Congress calling for Zika funding. Together, we have made our voices heard and have taken the first step towards progress in controlling the spread of Zika and its aftermath.”
The National Organization for Rare Disorders (NORD) is a 501(c)(3) independent charity and the leading independent advocacy organization representing all patients and families affected by rare diseases.
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