Press Releases Archives - NORD (National Organization for Rare Disorders)

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 Christina Jensen

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 10, 2019

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

National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum Featuring the Rare Impact Awards

Posted at May 5, 2019 10:46 am by Laura Mullen

Danbury, CT, December 3, 2018 – The National Organization for Rare Disorders (NORD) has announced a meeting for patients, caregivers and the medical community. The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will take place June 21 – 23 in Houston, Texas. In addition, the 2019 Rare Impact Awards… Read More

Tags: Living Rare, Living Rare Living Stronger, Living Stronger, National Organization for Rare Disorders, NORD

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 Christina Jensen

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

April 30, 2019

TOPIC: Featured News, Press Releases, Research

NORD Research Grant Program Celebrates 30th Anniversary, Funding Opportunities Announced

Posted at April 4, 2019 12:41 pm by Christina Jensen

All U.S. and international researchers are encouraged to apply by the initial application deadline of June 18, 2019

Washington, DC, April 30, 2019 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, is celebrating the 30th anniversary of its… Read More

Tags: ACD/MPV, Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins, Appendix Cancer and Pseudomyxoma Peritonei, APS-1, Autoimmune Polyglandular Syndrome Type 1, Bilary Atresia, Febrile Infection-Related Epilepsy Syndrome, FIRES, Malonia Aciduria, NEHI, Neuroendocrine Cell Hyperplasia of Infancy, New-Onset Refractory Status Epilepticus, NORD Research Grant Program, NORSE, PMP, Primary Orhostatic Tremor, Rare disease research, Rare Disease Research Grant, Request for Proposals, RFP

April 26, 2019

TOPIC: Featured News, Get Involved, Patients & Members, Press Releases, Research

NORD IAMRARE DHPS Patient Registry Launched

Posted at April 4, 2019 10:19 am by Christina Jensen

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased to share the press release… Read More

Tags: DHPS, DHPS Foundation, DHPS Patient Registry, FDA, IAMRARE, natural history study, Natural History Study Data, NORD IAMRARE Patient Registries, patient registry

1

2

3

…

19

Next >