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Archives for: August 1st, 2018

NORD Invites Video Submissions on Advocacy Experience

Written by Lisa Sencen on August 1, 2018

Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking… Read More

NORD Reaction to Recently-Enacted Government Spending Bill

Written by Lisa Sencen on March 29, 2018

After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical programs for the rare disease community as well as disappointing policy omissions from the final package.

For example, we had greatly… Read More

Free Educational Webinar Policy 101: Role of Government in Rare Disease Policy and Tips to Advocate for You and Your Loved One

Written by Lisa Sencen on February 20, 2018
Your local and state governments, as well as the Federal government, each play an integral role in enacting and implementing policy that affects the health and well-being… Read More

Your Help is Needed to #SaveCHIP

Written by Lisa Sencen on January 10, 2018
Today, advocates across the country are joining together to #SaveCHIP!
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Alone we are rare. Together we are strong.®

Copyright ©2019 NORD - National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.