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Rare Disease Community News

Rare diseases are in the news more than you would think. With 30 million Americans impacted, there are hundreds of stories being shared to raise awareness. Click here to read a selection of stories featuring initiatives from around the rare disease community and news from NORD.

News from NORD

NORD provides a comprehensive set of news for all rare disease stakeholders.

NORD eNewsletter
A monthly publication sent to over 13,000 subscribers. The publication’s content is diverse and appropriate for all audiences from patients and caregivers to researchers and industry representatives.

Policy Updates
NORD’s policy updates include action alerts for the rare disease community, opportunities to get involved with advocacy efforts, and updates on important rare disease policy.

Annual Appeal & Fundraising Opportunities
Interested in donating to NORD or raising money for our cause? This email will notify you of those opportunities.

NORD Events
Receive information related to upcoming events hosted by NORD. Events include the annual Rare Impact Awards and Rare Diseases and Orphan Products Breakthrough Summit®

News from NORD

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Click here to sign-up for your specific areas
of interest related to the rare disease community.

Media Inquiries

If you are a news media professional with a question for NORD, please submit your request using the form here. Please include as much information as possible with your request.

NORD Branding

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Hyperlink to downloadable zip file with NORD logos, colors, fonts, etc.

Hyperlink to NORD Brand Guideline


Rare News