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Aug. 1, 2018

TOPIC: Advocacy, Get Involved, Patient Stories

NORD Invites Video Submissions on Advocacy Experience

Posted 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 the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.

“35 Years & Growing: Personal Stories from the New Era of Patient Advocacy” is a campaign that aims to collect personal reflections through self-recorded video submissions in which advocates will discuss their own motivations, share ideas on how to engage more individuals in advocacy, provide tips for new advocates and more. Select videos will be featured on NORD’s Youtube channel and used to help support NORD’s advocacy programs by sharing real-world, inspirational examples of rare disease advocacy in action and the importance of getting involved.

For more information on the video campaign, including guidelines, submission instructions, suggested questions, video tips and sample videos, click here. The deadline for submissions is September 19.

About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most. NORD represents more than 280 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.

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