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Dec. 17, 2015

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

Get Involved in Your State on Rare Disease Day

Posted by Jennifer Huron


On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare. Here are some ideas to get started…

capitol-building-logo-design-concept-36879595State House Events

State House Events are happening in 30 states (and counting). Contact us and learn how to get involved. If there is no event taking place in your state, we can help you plan one.  State House Events are opportunities to meet face-to-face with your elected officials and advocate for legislation that directly affects the rare disease community.   Share your patient story – it may be presented at your state’s event or in meetings with legislators!

Proclamation Guide

Request a Rare Disease Day proclamation from your elected officials to use in media outreach and to share on social media. Together, we can surpass the U.S. record for Rare Disease Day, set in 2015!  Want to know if your state or municipality has already issued a proclamation? Contact Kristen Angell at

business-events-calendar-banner1Promote Your Event

NORD will help publicize your events on the U.S. and global websites and on social media. Tell us what you are planning – it’s easy with this form.

rdd-social-profileSocial Media: #RareDiseaseDay

Did you miss the socialmedia webinar hosted by EURORDIS (the world sponsor of Rare Disease Day)? No problem – watch it here to get greattips on howto build excitement!

rdd-logo-official-no-wordingOfficial Logo and Usage

The Rare Disease Day logo is a registered trademark. Questions on how to use it? Consult the official Style Guide.


Do you have questions about fundraising for NORD around Rare Disease Day? Send us your questions and we are happy to help!


Stay tuned for more updates and the new U.S. Rare Disease Day 
website – coming soon!

Questions? Planning an event? We want to hear from you! Contact us at

Rare Disease Day is sponsored and hosted in the U.S. by NORD. NORD is a member of the National Alliances, a group of umbrella organizations that work with Rare Disease Day founder, EURORDIS, to organize and present Rare Disease Day.

2 Responses to “Get Involved in Your State on Rare Disease Day”

  1. Hello ”
    You mentioned only 30 states are involved so far. How can I know if my state is a part of it? If not, how do I get them involved? Can you let me know ASAP? Thank you —- Deepay

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