Published April 30, 2019 by NORD
All U.S. and international researchers are encouraged to apply by the initial application deadline of June 18, 2019 Washington, DC, April 30, 2019 – The National Organization for Rare Disorders® …
Read morePublished April 26, 2019 by NORD
Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of …
Continue reading “NORD IAMRARE DHPS Patient Registry Launched”
Read morePublished April 18, 2019 by NORD
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives …
Read morePublished April 17, 2019 by NORD
This 5th annual issue is the largest to date and focuses on the progress in medical science, genetics, and neuromuscular diseases Parsippany, NJ – April 16, 2019 – Frontline Medical Communications (FMC) …
Continue reading “The 2019 Rare Neurological Disease Special Report Is Now Available”
Read morePublished April 16, 2019 by NORD
NORD has published a report in its Rare Disease Database on primary distal renal tubular acidosis (dRTA), a rare genetic disorder that affects the ability of the kidneys to remove …
Continue reading “NORD Publishes Report on Primary Distal Renal Tubular Acidosis”
Read morePublished April 9, 2019 by NORD
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum promises to be an unforgettable weekend for patients, families, medical professionals and students. Download the agenda now and register by April 26 to …
Continue reading “Living Rare, Living Stronger full agenda with speakers now available”
Read morePublished March 28, 2019 by NORD
A rare diagnosis can be a frightening and isolating experience, whether you are the patient or a caregiver for a loved one. However, NORD has created a video providing tips …
Continue reading “NORD Video Provides Advice for the Newly Diagnosed”
Read morePublished March 19, 2019 by NORD
In recent years, NORD has provided Patient Assistance Programs to assist the Chronic Granulomatous Disease (CGD), Cystinosis and Urea Cycle Disorders (UCD) communities. As of Monday, March 18, we are delighted …
Continue reading “NORD announces expansion of three Patient Assistance Programs”
Read morePublished March 18, 2019 by NORD
Today, Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. Now in …
Continue reading “Orphan Drug Act Resolution Introduced in the House of Representatives”
Read morePublished March 12, 2019 by NORD
Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for their outstanding work in support of …
Continue reading “NORD Announces Honorees for 2019 Rare Impact Awards”
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