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

November 14, 2019

TOPIC: Featured News, Patients & Members, Sticky Posts for Homepage

NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

Posted at November 11, 2019 06:12 am by Laura Mullen

At NORD, we know that patient-powered initiatives change the world. Our priority is advancing rare disease research and innovation by working together to overcome critical challenges.

In 1989 and again in 2003, NORD conducted a survey to better understand the barriers and facilitators of rare disease… Read More

Tags: NORD survey, patient-powered initiatives, Rare disease research

October 4, 2019

TOPIC: Sticky Posts for Homepage, Sticky Posts for Patients and Families

NORD Patient Assistance Program for 2020

Posted at October 10, 2019 07:00 am by Valaree DonFrancesco

NORD is glad to have been able to assist you in accessing care and treatment for your rare disorder in 2019. If you need continued assistance in 2020, it’s time to re-enroll. Programs will be opening on a rolling basis. Please look out for re-enrollment communications in your email and mail this month and in coming months… Read More

August 21, 2019

TOPIC: Sticky Posts for Homepage

Living Rare Living Stronger

Posted at August 8, 2019 03:20 pm by Sean Roberts

July 2, 2019

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

Registration Open for 2020 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

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