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

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

May 31, 2018

TOPIC: Events, Get Involved

A Celebration of NORD’s 35th Anniversary

Posted at May 5, 2018 11:19 am by Christina Jensen

On Thursday, May 17 at the Andrew W. Mellon Auditorium in Washington, D.C. the rare disease community came together to celebrate NORD’s 35th Anniversary and to recognize the amazing accomplishments of the 2018 honorees during NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards.

Tags: Abbey S. Meyers Leadership Award, Curing Retinal Blindness Foundation, Lifetime Achievement Award, Michael Smedley, NORD, NORD's 35th Anniversary Celebration, Orphan Drug Act, Patricia Richardson, Peter L. Saltonstall, Public Health Leadership Award, rare disease community, Rare Impact Award, Rare Impact Award Honoree, Rare Impact Award Honorees, Rare Impact Awards, The David Bach Consort

May 21, 2018

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

Save the Date for NORD’s 2018 Rare Summit

Posted at May 5, 2018 03:36 pm by Christina Jensen

We are looking forward to bringing all stakeholders in rare diseases together once again for our annual Rare Diseases and Orphan Products Breakthrough Summit. We hope to see you there! Please mark the details below in your calendars and keep an eye out for a registration announcement in early June.

Rare Diseases &… Read More

Tags: 2018 Rare Summit, NORD Rare Summit, Rare Diseases & Orphan Products Breakthrough Summit

May 10, 2018

TOPIC: Events, Featured News, Get Involved

Watch LIVE: NORD’s 35th Anniversary & Rare Impact Awards Celebration

Posted at May 5, 2018 10:24 am by Christina Jensen

NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards is only one week away, happening next Thursday, May 17, at the Andrew W. Mellon Auditorium in Washington, D.C. If you are not able to attend in person, please join us for a special webcast of the event using Facebook Live!

How to Watch:

On Thursday, May 17 at… Read More

Tags: 35th Anniversary, Facebook Live, livestream, NORD's 35th Anniversary Celebration presenting the Rare Impact Awards, Rare Impact, Rare Impact Awards

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