The Superficial Siderosis Research Alliance celebrates its 2nd anniversary on September 24, 2021
Since its inception in 2019, the SSRA has been honored to represent the superficial siderosis rare disorder community. Battling a rare disorder is difficult, but patients and caregivers are no longer alone in this fight with the Superficial Siderosis Research Alliance (SSRA).
This past year the SSRA has provided educational and awareness material to patients and providers supporting our mission. Guidelines for U.S. patients who need assistance with social security disability applications. Continues to host a global physician directory for those looking for a provider or surgeon familiar with superficial siderosis and helps connect patients to the Superficial Siderosis Clinic at Mass General Hospital.
In the U.S alone, more than 7,000 rare diseases affect over 25 million Americans. Unfortunately, these families often have trouble accessing life-saving medical treatment or other services because their insurance companies or physicians are unfamiliar with their conditions. The SSRA has represented the SS patient interests at state and federal legislative levels advocating for healthcare and research policy.
Developing Our Infrastucture
The updated Global Patient Registry now offers a research portal in partnership with the Vanderbilt University RedCap consortium. REDCap provides an easy-to-use and secure method of flexible yet robust data collection for any research project. Additionally, the SSRA now has the technology to host webinars, symposiums, and other virtual events with an attendance capability of up to 1000 viewers.
The SSRA has experienced exceptional technological growth and development over the last year. This progress will allow us to begin the next steps towards our goal of a patient-directed collaborative research network.
Taking Awareness For a Spin
Our awareness program not only has boots on the ground, but we can now include wheels on the ground! Kyle was approached earlier this year with a unique opportunity to promote both the SSRA and superficial siderosis awareness. As a result, the SSRA name blazes around tracks in the IMCA Dirt Stock Car class every week.
Dustin Loberger, out of Oconto, Wisconsin, is the driver. During this year’s circuit, Dustin won the 4th heat in a qualifying feature in Boone, Iowa, for the IMCA Super Nationals. Go, Dustin!