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October 9, 2020

TOPIC: Press Releases, Featured News, Medical, Patients & Members, Research, Advocacy, Industry, Events

NORD Highlights New Era of Innovation and Public Health Awareness in Virtual 2020 Rare Diseases and Orphan Products Breakthrough Summit

Posted at October 10, 2020 10:45 am by Valaree DonFrancesco

Washington, DC, October 9, 2020—On October 8 and 9, the National Organization for Rare Disorders (NORD®virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit, the first time the organization representing over 25 million Americans impacted by rare diseases has presented the conference exclusively… Read More

October 1, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Research, Advocacy

NORD Launches Innovative Natural History Study on Metachromatic Leukodystrophy (MLD)

Posted at October 10, 2020 10:07 am by Valaree DonFrancesco

Washington, DC, 10/1/2020 — Today, the National Organization for Rare Disorders (NORD®) opened registration for a natural history study on metachromatic leukodystrophy (MLD), a lethal rare disease currently without an FDAapproved treatmentNORD’s Natural History OMEtachromatic Leukodystrophy (Read More

September 28, 2020

TOPIC: Press Releases, Featured News, Research, Advocacy

A Cure In Sight, in partnership with the UCSF Ocular Oncology Center and NORD, Launches Landmark Ocular Melanoma Natural History Study

Posted at September 9, 2020 08:21 am by Valaree DonFrancesco

Cleveland, OH, September 28, 2020—A Cure in Sight and the National Organization for Rare Disorders have launched an innovative study to research ocular melanoma, a disease that can cause blindness, loss of the eye and even death from spread to other organs.

The new study, INSIGHT: A Global Ocular Melanoma Patient Registry, creates a platform for patients around the world… Read More

September 24, 2020

TOPIC: Press Releases, Featured News, Advocacy

NORD Joins Coalition Representing Millions of Patients to Release Telehealth Principles

Posted at September 9, 2020 10:18 am by Valaree DonFrancesco

For Immediate Release 

Major Groups Representing Millions of Patients Release Telehealth Principles  

September 24, 2020 – 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… Read More

September 16, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy

Rare Cancer Day 2020 To Take Place on September 30

Posted at September 9, 2020 09:54 am by Valaree DonFrancesco

Washington, DC, September 16, 2020–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 27 rare cancer-specific member organizations, Rare Cancer Day is observed to bring attention to the… Read More