patients with sarcoidosis Archives

What’s one of the top ten mysterious diseases? Sarcoidosis
Patient communities, Patient insights

What’s one of the top ten mysterious diseases? Sarcoidosis

What’s one of the top ten mysterious diseases? Sarcoidosis By Kathleen Hoffman, PhD, MSPH Rare disease sufferers may be few in number for a particular condition, but they are an army of survivors when they’re together. Sarcoidosis is one of the 3000 rare diseases represented in Inspire’s community. With 600,000 Inspire members affected by rare conditions, the over 95,000 making up the Sarcoidosis audience on Inspire or “sarkies,” as they call themselves, are in good company. Dr. Michael Iannuzzi, the Edward C. Reifenstein Professor and Chair at the State University of New York-Upstate Medical University, calls sarcoidosis [...]

Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020

Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020 By Jeff Terkowitz Lesley Gosden, a patient and patient advocate with Parkinson's disease, gave the patient keynote speech opening “Patients As Partners Europe,” held January 27-28.1 She described her experience in the GDNF study, which involved the surgical implantation of a port for infusions of GDNF directly into the brain of Parkinson’s patients, bypassing the blood-brain barrier. Ms. Gosden is one of those who experienced an enormous benefit from the GDNF: prior to her involvement in the trial, she was wheelchair bound. Afterwards, she could walk again. [...]

When It Comes to Clinical Trials, Patient Concerns Differ

When It Comes to Clinical Trials, Patient Concerns Differ By Kathleen Hoffman, PhD, MSPH In 2019, Inspire researched patients and caregivers feelings about, and understanding of, clinical trials. Over 1500 members (1644) participated: Members with arthritis, colorectal cancer, prostate cancer, psoriasis, ovarian cancer, sarcoidosis and scleroderma. The findings show that these groups have different understandings of and concerns about clinical trials. Sixteen percent of the participants had already participated in clinical trials. Another 15 percent had tried to participate in a clinical trial but 1) were not eligible, 2) the clinical trial was full or 3) [...]