Published March 21, 2018 by NORD
In advance of another vote on the Right to Try Act scheduled to occur later today, NORD joined over 100 patient and provider organizations in sending a renewed letter to the House of …
Read morePublished March 20, 2018 by NORD
The 2018 report has grown to cover several emerging issues. Download your copy today.
Read morePublished March 14, 2018 by NORD
Washington, D.C., March 14, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement in …
Continue reading “NORD Issues Statement Regarding House Vote on Right to Try”
Read morePublished March 13, 2018 by NORD
Yesterday evening, NORD joined 82 patient and provider organizations in sending a letter to the House of Representatives stating our opposition to the newest version of the Right to Try …
Continue reading “83 Patient and Provider Organizations Remain Opposed to Right to Try Legislation”
Read morePublished 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”
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