Get Involved Archives - NORD (National Organization for Rare Disorders)

Make your choice from this menu of thought-provoking, informative Lunch & Learn sessions available for attendees of the 2018 NORD Rare Summit. With only 25 days to go, be sure to save your seat at the table by registering for the Summit and choosing your lunch option now! Lunch & Learn sessions have limited seating and will be first-come,… Read More

September 12, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Research

Three Big Reasons Not to Miss the 2018 NORD Rare Summit

Posted at September 9, 2018 04:35 pm by Christina Jensen

Tags: Cincinnati Children's Hospital Medical Center, Hemophilia Federation of America, Networking, NORD Rare Summit, NORD Summit, Poster Abstracts, Rare Diseases and Orphan Products Breakthrough Summit, Sanofi Genzyme

August 29, 2018

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

2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Posted at August 8, 2018 10:48 am by Christina Jensen

Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of the speakers confirmed for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit, to be held October 15-16 in Washington, D.C…. Read More

Tags: FDA, Food and Drug Administration, NIH, NORD Rare Summit, NORD Summit, Peter L. Saltonstall, Rare Diseases & Orphan Products Breakthrough Summit, Rare Summit

August 9, 2018

TOPIC: Events, Featured News, Get Involved

Join us at the 2018 NORD Rare Summit

Posted at August 8, 2018 09:19 am by Christina Jensen

Dear Reader,

I want to invite you to join me and 700 others from the rare disease community at our annual Summit. This year, NORD’s 2018 Rare Diseases and Orphan Products Breakthrough Summit will take place October 15-16 in Washington, D.C.

We expect this year’s Summit to again be the single most important gathering of the rare disease community…. Read More

Tags: Dr. Scott Gottlieb, FDA, FDA Commissioner, NORD Rare Summit, NORD Summit, Patient-Focused Drug Development, Peter L. Saltonstall, Rare Diseases and Orphan Products Breakthrough Summit

August 1, 2018

TOPIC: Advocacy, Get Involved, Patient Stories

NORD Invites Video Submissions on Advocacy Experience

Posted at August 8, 2018 10:05 am by Christina Jensen

Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking the organization’s 35 years of voicing the needs of… Read More

Tags: 35 Years and Growing, advocacy, NORD's 35th Anniversary, patient advocacy, Patient Focused, patient stories, rare disease, Rare Disease Advocacy, video submissions