Post by Amgen

Name: On average, it can take five or more years for a person with a rare disease to get an accurate diagn
Uploaded: 2026-06-25T16:03:55.614Z
Channel: Amgen
Description: On average, it can take five or more years for a person with a rare disease to get an accurate diagnosis. For Silvia, it took nearly 30 years. Her condition, IgG4-related disease (IgG4-RD), can aff

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On average, it can take five or more years for a person with a rare disease to get an accurate diagnosis. For Silvia, it took nearly 30 years. Her condition, IgG4-related disease (IgG4-RD), can affect almost any organ in the body and mimic a range of other disorders, making it challenging to diagnose. At a recent Amgen-hosted panel, Silvia shared her experience with Dr. Emma Culver and IgG4ward!’s Katharine M. Provencher, MSW, whose advocacy began after her husband's diagnosis. Their conversation explored the human cost of IgG4-RD and the momentum building toward advancing care through: ✅ increased clinician awareness ✅ improved recognition and classification of IgG4-RD ✅deeper understanding of related biomarkers Read the full recap: https://amgen.ly/4oMzBpx

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