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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

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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

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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

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March 23, 2021

TOPIC: Featured News

Save On Quality, Vetted PPE with NORD and Project N95

Posted by Valaree DonFrancesco

To help rare disease community members who are having trouble acquiring quality, vetted PPE, the National Organization for Rare Disorders (NORD)® is collaborating with the nonprofit Project N95 so you can purchase N95 respirators (certified by CDC and NIOSH), nitrile powder free gloves, Level 1 AAMI isolation gowns, ASTM Level 1 and Level 3 surgical… Read More

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March 22, 2021

TOPIC: Research, Registries

ACD and NORD Launch the CreatineInfo Registry and Natural History Study of Cerebral Creatine Deficiency Syndromes

Posted by Lisa Sencen

Carlsbad, CA (March 15, 2021)— The Association for Creatine Deficiencies (ACD) and the National Organization for Rare Disorders (NORD) launched the largest-ever study to research Cerebral Creatine Deficiency Syndromes (CCDS). The CCDS rare diseases, a group of inborn errors of creatine metabolism, may cause intellectual delays, expressive… Read More

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