According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 30 million Americans lives with a rare disease – that’s 1 in 10 people – and nearly half of these patients are children.
There are more than 7,000 rare diseases and only approximately 500 FDA-approved medical treatments currently available.
The National Organization for Rare Disorders (NORD) invites all advocates to attend and participate in the Rare Action Network Patient Advocacy & Orphan Drug Workshop held from 9 a.m. to 3 p.m. on Friday, Aug. 17 at the Renaissance Indianapolis North Hotel in Carmel.
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 Indiana about the Orphan Drug Act. This event is hosted at no cost to participants. Light breakfast and lunch will be provided. To register for this event, please visit RareIN.org.
About Rare Action Network
The Rare Action Network™ (RAN), powered by the National Organization for Rare Disorders (NORD), serves to connect and empower a unified network of individuals and organizations with tools, training and resources to become effective advocates for rare diseases through national and state based initiatives across the United States. The RAN stand for equitable access to timely diagnosis, treatment and care for every person impacted by a rare disease. Click here for more information about the Rare Action Network.
About NORD
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 270 patient organization members, is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and patient services. For more information about NORD, visit rarediseases.org.