Sticky Posts for Homepage Archives - NORD (National Organization for Rare Disorders)

August 21, 2019

TOPIC: Advocacy, Featured News, Get Involved, Sticky Posts for Homepage

Mark Your Calendars – October 1 is Rare Cancer Day!

Posted at August 8, 2019 09:19 am by Laura Mullen

Washington, DC, August 29, 2019–The National Organization for Rare DisordersⓇ (NORD) has announced a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition, which is comprised of 24 rare cancer-specific Member Organizations, Rare Cancer Day will be observed on October 1 to highlight the challenges people living with rare cancers face… Read More

Tags: #RareCancerDay, fibrolamellar, Jim Palma, John Hopper, NORD, rare cancer, Rare Cancer awareness, rare cancer coalition, rare cancer day

July 2, 2019

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage

Registration Open for 2019 NORD Rare Summit

Posted at July 7, 2019 09:01 am by Lisa Sencen

The time is now…

To address affordability for patients,
To drive progress with a unified voice,
To understand the role of advancing technology in rare disease, and
To register for the 2019 NORD Rare Summit!

In 2019, we believe “The Time is Now“ to prioritize action in order to develop stronger resources, build better outcomes and find cures for the millions of Americans living with… Read More

Tags: affordability, drug pricing, NORD Rare Summit, NORD Summit, rare disease technology, Rare Diseases & Orphan Products Breakthrough Summit

June 3, 2019

TOPIC: Featured News, Patient Stories, Patients & Members, Press Releases, Research, Sticky Posts for Homepage

NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES

Posted at June 6, 2019 05:33 am by Lisa Sencen

Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders

Washington, DC, June 3, 2019—The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the estimated 30 million Americans living with… Read More

Tags: Brent Clough, FDA, Food and Drug Administration, IAMRARE, Janet Woodcock MD, natural history study, Natural History Study Data, NORD, NORD registry community, patient registry, patient registry data, Peter L. Saltonstall, The Power of Patients, The Power of Patients: Informing Our Understanding of Rare Diseases, Trio Health

May 7, 2019

TOPIC: Advocacy, Featured News, Industry, Patients & Members, Press Releases, Sticky Posts for Homepage

NORD Releases Principles for Assessing Proposals Designed to Lower the Cost of Prescription Drugs in the United States

Posted at May 5, 2019 09:42 am by Lisa Sencen

Washington, DC, May 7, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced its development of key drug pricing principles, created with the needs of the rare disease community in mind.

People living with rare diseases must be able to afford the therapies that… Read More

Tags: drug pricing, FDA, IQVIA, ODA, Orphan Drug Act, Orphan Drug Pricing, orphan drugs, rare disease