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These prominent leaders in the field of autoimmune disease discuss AHN's Autoimmunity Institute joining forces with the Relapsing Polychondritis Foundation.
Joseph Ahearn, MD, Chair, Autoimmunity Institute, Allegheny Health Network (AHN), and Michael Linn, Vice Chair, Relapsing Polychondritis Foundation, join HCPLive discuss the momentous moves happening in the realm of relapsing polychondritis (RP), very rare condition that affects approximately 3-5 individuals per million people.
Because there are no blood tests, or even biomarkers to analyze, as Ahearn explained, relapsing polychondritis is very difficult to diagnose. As a result, a diagnosis usually comes from observing symptoms and patterns associated with RP, which can take an extended amount of time.
Unfortunately, if this condition isn't identified early and treated effectively, a patient can suffer from irreversible damage and long-term complications.
Linn, who is also an advocate for autoimmune disease, shared that for some individuals who live with relapsing polychondritis, like his sister Nancy, the symptoms can be persistent without relapse.
"So, there is a spectrum with patients," he said. "For some it's extreme excruciating pain, it can cause significant breathing issues, skin issues–it's very challenging."
Linn spoke about the new partnership between the Relapsing Polychondritis Research Foundation and the Autoimmunity Institute at Allegheny Health Network.
"When my sister was diagnosed, not that long ago, it was really upsetting because there essentially wasn't any research you could find online," he said. "So, we quickly decided that we needed to band together and increase awareness."
According to Ahearn, a big challenge for the field of relapsing polychondritis is that no single institution is going to have the time and resources that are necessary to come up with diagnostics, to come up with therapies, especially without having biomarkers identified for RP.
"So, what we've done is the Autoimmunity Institution just partnered with the Relapsing Polychondritis Foundation," Ahearn said, "to launch a national, and most likely international effort direct to patients, where we will be recruiting patients, and housing their samples at our institution that will be then available to investigators throughout the country, and eventually throughout the world who want to study the disease to come up with the biomarkers, to make the diagnostics to discover the therapies."