SRF to Host New Virtual Patient Forum, Collaborating for a Cure

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by Steve Bryson, PhD |

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To kick off Scleroderma Awareness Month, the Scleroderma Research Foundation (SRF) will host a free online patient forum, Collaborating for a Cure, on June 1.

The half-day forum will gather leaders from the medical and scientific community so that those who live with scleroderma, and their families and friends, can learn more about the disease and the latest research, some of which has been funded by the SRF. To register for the virtual event, click here.

“As someone living with scleroderma, I know how challenging it can feel when searching for answers,” Luke Evnin, PhD, SRF Board Chairman, said in a press release. “The SRF’s commitment to our patients includes a deep commitment to providing needed information.

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“The new patient forum represents an evolution of our efforts and will be a key component of our broader work to communicate the research and medical advancements,” Evnin added.

Scleroderma is a rare, chronic disease that affects the skin and connective tissue, marked by thick and hardened skin caused by the buildup of scar tissue. It can also damage blood vessels and internal organs, including the lungs, heart, stomach, and kidneys.

The forum’s agenda will include educational sessions, led by scientists and clinicians, on the management of symptoms, news from scleroderma research, and how patients can help find a cure for the condition.

Participants will have the opportunity to engage in live Q&A sessions with presenters, win prizes through interactive activities, and more.

Following the forum and throughout Scleroderma Awareness Month, the SRF will also hold the second annual #SayScleroderma campaign to raise awareness about the disease. A lack of understanding can lead to delays in diagnosis and treatment.

Throughout June, the SRF will feature stories from scleroderma patients on social media, along with ways those in the scleroderma community can make a difference.

“Since our founding in 1987, patients have been essential to supporting the Scleroderma Research Foundation and contribute to the advancement of our research programs through direct engagement as study participants, serving as advocates to raise awareness about the disease, and helping to raise funds to support research investments,” said Joanne Gold, executive director of the SRF.

“As we head into Scleroderma Awareness Month, the virtual patient forum is a way for people living with scleroderma to learn more from leading researchers in the field, connect with a community of advocates, and further the opportunity for discovery to end this disease,” Gold added.