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Upcoming Rare Action Network Workshops

 

We hope to see you at one of our upcoming Advocacy workshops and our Rare Disease Day events being planned across numerous states!

 

Pennsylvania Rare Action Network Patient Advocacy & Orphan Drug Workshop

 

The National Organization for Rare Disorders invites all advocates to attend and participate in the Rare Action Network Patient Advocacy & Orphan Drug Workshop being held on Friday, February 1, 2019 from 8:30am to 3:00pm, Allentown, Pennsylvania. This will be an opportunity to learn about rare disease patient advocacy and connect with NORD about current legislative actions. In addition, this workshop will feature an opportunity to speak directly with members of Congress from Pennsylvania about the Orphan Drug Act. This event is hosted at no cost to participants, and a light breakfast and lunch will be served.

 

Click Here to Register for the PA RAN Workshop!

Arkansas Rare Action Network Patient Advocacy & Orphan Drug Workshop

 

The National Organization for Rare Disorders invites all advocates to attend and participate in the Rare Action Network Patient Advocacy & Orphan Drug Workshop being held on Saturday, February 23, 2019 from 8:30am to 3:00pm, Little Rock, Arkansas. This will be an opportunity to learn about rare disease patient advocacy and connect with NORD about current legislative actions. In addition, this workshop will feature an opportunity to speak directly with members of Congress from Arkansas about the Orphan Drug Act. This event is hosted at no cost to participants, and a light breakfast and lunch will be served.

 

Click Here to Register for the AR RAN Workshop!

California Rare Action Network Patient Advocacy & Orphan Drug Workshop

 

The National Organization for Rare Disorders invites all advocates to attend and participate in the Rare Action Network Patient Advocacy & Orphan Drug Workshop being held on Saturday, March 9, 2019 from 8:30am to 3:00pm, Hyatt Regency Sacramento, 1209 L St, Sacramento, CA 95814. This will be an opportunity to learn about rare disease patient advocacy and connect with NORD about current legislative actions. In addition, this workshop will feature an opportunity to speak directly with members of Congress from California about the Orphan Drug Act. This event is hosted at no cost to participants, and a light breakfast and lunch will be served.

 

Click Here to Register for the CA RAN Workshop!

Get Involved

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Each year on the last day of February, the rare disease community comes together to show support for the 25-30 million Americans impacted by rare diseases. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives. 

Patients, families, caregivers, medical professionals and industry representatives are invited to attend events to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families in your state!

Visit the Rare Action State Pages and see the events being planned on or around Rare Disease Day in your state! 

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NORD has selected 13 runners to participate on the Running for Rare Boston Marathon Team on April 15, 2019. NORD received applications from all over the country from runners eager to raise money and awareness for rare diseases. If you're interested in how to get involved, email runningteam@rarediseases.org

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The Rare Action Network® is powered by NORD, the leading non-profit organization that is serving the rare disease community through programs of advocacy, education, research, and patient services.


NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. www.rarediseases.org