National Organization for Rare Disorders
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63 articles with National Organization for Rare Disorders
To Bolster the Voice of the Rare Community in State Government, NORD Launches Project RDAC, Announces Inaugural Meeting on December 16
Rare Disease Advisory Councils enable the rare community to have a say in how their state's programs and policies can support patients and caregivers
NORD Announces RareLaunch Workshops to Support Those Seeking to Start Rare Disease Nonprofits or Research Programs
As part of its commitment to community engagement and organizational capacity building, the National Organization for Rare Disorders' RareLaunch® training program will host two days of free workshops to take place in December, funded in part through a grant from the Chan Zuckerberg Initiative Donor-Advised Fund, an advised fund of Silicon Valley Community Foundation.
Rare Disease Cures Accelerator-Data and Analytics Platform First Year Milestones Highlighted at Virtual Workshop
C-Path, NORD, FDA and more come together to showcase the importance of data sharing in rare disease drug development
33 Organizations Representing Millions of Patients Urge Policymakers to Adopt "Patient-First" Policy Agenda
A coalition of 33 organizations representing millions of people with pre-existing conditions launched an unprecedented effort by releasing their top priorities for the next Administration.
A coalition of organizations representing millions of patients who live with serious, acute, and chronic conditions has released principles to guide policymakers seeking to ensure patients can continue to safely access appropriate telehealth services during and after the COVID-19 public health emergency.
The National Organization for Rare Disorders (NORD®) has announced the second annual Rare Cancer Day, taking place September 30, 2020 . Spearheaded by the NORD Rare Cancer Coalition, which is composed of
NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series
Drawing on NORD's expertise in capacity-building and nonprofit management during crises, the new program will support rare disease patient organizations through education, training and resources
The National Organization for Rare Disorders has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational or clinical studies related to the development of new diagnostics or treatments for rare disease.
In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program
NORD's COVID-19 Premium & Medical Relief Program assists eligible rare disease patients facing financial challenges with out of pocket costs of health insurance premiums and limited medical assistance
The NORD COVID-19 Critical Relief Program provides support to rare disease patients and families facing financial challenges, helping them afford essential non-medical expenses.
US and European rare disease patient alliances, the National Organization for Rare Disorders (NORD®) and EURORDIS-Rare Diseases Europe call for the expeditious development of COVID-19 treatments without the use of orphan drug incentives
NORD Welcomes Vice President of Information Technology Prashant Goel, Who Joins to Lead a Team of IT Innovators in Rare Disease
The National Organization for Rare Disorders is pleased to welcome Prashant Goel as the new Vice President of Information Technology, based in the Danbury, CT office.
The National Organization for Rare Disorders has announced this year's roster of rare disease change-makers, the 2020 Rare Impact Award honorees.
NORD Report Shows Key Policy Improvements Were Achieved by States in 2019 But More Progress Is Needed to Support Americans Living with Rare Diseases
According to the 5th Edition of the "State of the States Report," released by the National Organization for Rare Disorders and its Rare Action Network, while many US states took powerful steps forward in 2019, there is major work yet to be done on a number of policy issues critical to over 25 million Americans affected by rare diseases.
Over 900 Registrants Gather for Impactful Sessions, Countless Connections and One Historic Speech [23-October-2019] WASHINGTON , Oct. 23, 2019 /PRNewswire/ -- Earlier this week, the National Organization for Rare DisordersⓇ (NORD) broke previous records with its 2019 Rare Diseases & Orphan Products Breakthrough Summit , welcoming over 900 registrants to two day
Coalition of Rare Cancer Organizations Launches First-Ever Awareness Day Dedicated to Education, Connections and Hope
The National Organization for Rare Disorders®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, has announced the Patient/Caregiver Opening Address speakers for the 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit, to be held October 21-22 in Washington, DC.
4/5/2019In January 2019, the U.S. Food and Drug Administration (FDA) updated a 2015 draft guidance on rare diseases.
New Study Finds Orphan Drug Exclusivity Working As Intended, On-Market Orphan Drug Prices Rise Slower than Common Drugs
A new report commissioned by the National Organization for Rare Disorders (NORD) and published today by the IQVIA Institute, demonstrates that the seven-year market exclusivity granted to drugs designated under the Orphan Drug Act of 1983 for rare diseases is working as intended.
National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum
Featuring the Rare Impact Awards