Published March 7, 2018 by NORD
Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018. On this day, everyone comes together globally to bring …
Continue reading “Another Successful Rare Disease Day®”
Read morePublished March 2, 2018 by NORD
*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general` A rare disease, by definition, affects …
Continue reading “Changing the Landscape of Rare Disease Research”
Read morePublished February 28, 2018 by NORD
Listening Sessions to Enable Sharing Rare Disease Experiences with FDA Review Divisions Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the …
Continue reading “NORD to Collaborate with FDA on Pilot Patient Engagement Activity”
Read morePublished February 25, 2018 by NORD
Washington, D.C., February 26, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, last week joined 125 rare disease …
Continue reading “NORD Joins 125 Patient Organizations in Support of Medicaid Formulary Access”
Read morePublished February 13, 2018 by NORD
Washington, D.C., February 13, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today followed up on the recent coalition letter emphasizing …
Continue reading “One-pager from NORD on Opposition to Right to Try Act”
Read morePublished February 8, 2018 by NORD
Washington, D.C., February 8, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding recent …
Continue reading “NORD Statement Regarding State Proposals to Alter Their Medicaid Program”
Read morePublished February 8, 2018 by NORD
The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has announced the availability of three research grants …
Continue reading “Current Funding Opportunity: NORD Research Grants for Rare Diseases”
Read morePublished February 6, 2018 by NORD
Washington, D.C., February 6, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today joined 37 patient and provider organizations in …
Continue reading “NORD Sends Letter to House of Representatives on Right to Try Act”
Read morePublished January 26, 2018 by NORD
Washington, D.C., January 26, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the confirmation by the …
Continue reading “NORD Issues Statement on Confirmation of New Secretary of HHS, Alex Azar”
Read morePublished January 5, 2018 by NORD
Washington, D.C. – January 5, 2018 – today, NORD sent the following letter to Majority Leader Mitch McConnell and Minority Leader Chuck Schumer in support of Alex Azar’s candidacy for Secretary of the Department of Health and Human Services (HHS): …
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