Published August 28, 2017 by NORD
Washington, D.C., August 28, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Sitosterolemia. …
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Read morePublished August 3, 2017 by NORD
Washington, D.C., August 3, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response …
Read morePublished June 22, 2017 by NORD
Washington, D.C., June 22, 2017 – 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 …
Continue reading “NORD Issues Statement on the Better Care Reconciliation Act of 2017”
Read morePublished June 13, 2017 by NORD
Washington, D.C., June 13, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on CARD9 …
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Read morePublished May 31, 2017 by NORD
Washington, D.C., May 31, 2017—NORD released the following statement in advance of today’s “Orphan Drug Assessment and Pricing Summit” held by the Institute for Clinical and Economic Review (ICER): “We are …
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Read morePublished May 2, 2017 by NORD
WASHINGTON, D.C., May 2, 2017–Seven patient advocacy organizations today laid out a joint set of principles to guide any efforts that seek to change the process of accessing unapproved therapies …
Read morePublished May 1, 2017 by NORD
Washington (May 1, 2017) – On behalf of more than one hundred million Americans battling chronic and other major health conditions, a coalition of 10 patient organizations remains united in …
Continue reading “Leading Patient Advocacy Groups Stand Together to Oppose American Health Care Act”
Read morePublished May 1, 2017 by NORD
CALL TO ACTION: Congress could vote this week – please take a minute to phone your legislators and ask them to vote no (click) Washington, D.C., May 1, 2017—The National …
Read morePublished April 4, 2017 by NORD
Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie …
Continue reading “NORD Names New Director of Membership”
Read morePublished March 31, 2017 by NORD
Research study is open to participants worldwide to advance understanding and treatments for rare disease causing blistering that may be accompanied by severe pain, itching, burning, and stinging. Sacramento, CA …
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