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April 29, 2021

TOPIC: Featured News, Patients & Members, Advocacy

New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey

Posted by Valaree DonFrancesco

The road to a correct rare disease diagnosis is far too long. This Undiagnosed Day, please share this infographic with your community and if you, or someone you know, is in need of information or resources to assist you on your diagnosis journey, please visit our Undiagnosed Rare Disease… Read More

April 22, 2021

TOPIC: Press Releases, Medical, Research

CDISC and NORD Partner to Develop Data Standards for Rare Diseases

Posted by Valaree DonFrancesco

Danbury, CT and Austin, TX – April 22, 2021 – 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… Read More

April 8, 2021

TOPIC: Medical, Patients & Members, Industry, Members

NORD Expands Gene Therapy Offerings Through New Online Resources

Posted by Lisa Sencen

For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions. With this goal in mind, NORD is dedicated to producing a variety of educational resources for patients, caregivers, health care providers, and the public.

One of the newest resources… Read More

April 7, 2021

TOPIC: Featured News, Patients & Members

Ray Stevens is Taking Rare Disease Awareness to New Heights

Posted by Valaree DonFrancesco

In 2001, Ray was inspired by a family he met whose daughter was diagnosed with phenylketonuria (PKU). He translated his academic knowledge into clinical treatments and was able to help create two new medicines for this devastating rare disease. Then in 2007, his daughter, who was four years old at the time, was diagnosed with Kawasaki disease, a rare… Read More

March 25, 2021

TOPIC: Press Releases, Featured News, Research, Industry

New Study Investigates the Number of Available Orphan Products, Generics and Biosimilars

Posted by Jennifer Huron

Washington, DC, March 25, 2021—The National Organization for Rare Disorders (NORD®) today announced the findings of a new study that details the number of orphan products, generics and biosimilars available to treat rare diseases. NORD commissioned Avalere to conduct the analysis to examine if laws and regulations are helping to bring… Read More