Rare disease tour at Sanford Health aims to connect, empower patients and families
Jul 03, 2019 10:43AM
By MED Magazine
Two national rare disease advocacy organizations will bring their road tour to Sanford Health in July.
Global Genes and the EveryLife Foundation are in the midst of their RARE on the Road tour, a collective effort to build and activate the rare disease community at a local level. The multi-city event increases value, insights and knowledge for rare disease patients, caregivers and advocates. Participants will learn how to tell their story, connect with others in the community and navigate the complex world of rare disease.
“These groups bring a wealth of knowledge and resources to the rare disease community,” says Ben Forred, director of clinical research for Sanford Health. “This event will illuminate the rare disease community in the Midwest, and empower participants to advocate for themselves and their families.”
The event is 8:30 a.m. to 4 p.m. on Saturday, July 13, at the Sanford Center, 2301 E. 60th St. N., Sioux Falls, South Dakota.
RARE on the Road will work with Sanford Research institution CoRDS, a not-for-profit centralized international patient registry for rare diseases. The goal is to connect patients with researchers and to build and activate the rare disease community at a local level.
Globally, 350 million people are living with a rare disease. There is a tremendous need for coordinated support, education, collaboration and experience sharing for people affected by rare diseases, according to Global Genes.
“When you look at rare diseases collectively, they aren’t rare at all,” said Julia Jenkins, EveryLife Foundation executive director. “That’s why it’s so important to connect with communities across the country. We are excited to meet the patients and families in Sioux Falls and to help them share their stories.”
Registration for the event is at https://raretour.org.