National Organization for Rare Disorders
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70 articles with National Organization for Rare Disorders
National Organization for Rare Disorders (NORD) Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer
New position reflects NORD's commitment to advancing research and improving medical outcomes for the millions of Americans living with rare diseases
National Organization for Rare Disorders (NORD) Announces Kay Holcombe as New Board Chair and Dennis Jackman as New Member of its Board of Directors
The National Organization for Rare Disorders announced that during a recent Board of Directors meeting, Kay Holcombe was elected as Chair and Dennis Jackman joined as a new Board member.
CDISC and the National Organization for Rare Disorders (NORD ® ) have announced a partnership to develop global data standards for rare diseases. The data standards will be released in a Therapeutic Area User Guide that will be available at no cost on the CDISC website for researchers to leverage in studies to maximize data’s full potential.
The National Organization for Rare Disorders announced the findings of a new study that details the number of orphan products, generics and biosimilars available to treat rare diseases.
June 28 virtual event to honor those making extraordinary strides to improve the lives of patients and families impacted by rare diseases
Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public.
NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines
In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders, along with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, hosted a special webinar with leaders from the US Food and Drug Administration and the Centers for Disease Control and Prevention.
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.