Bringing Rare Disease Patients Together

Patient advocates share stories to empower others living with similar conditions.

Rare disease patients talking at CSL rare disease patient summit

Fifty patient advocates representing different rare diseases came together to swap stories, exchange tips and learn how to effectively share their experiences with fellow patients at biotechnology leader CSL Behring’s annual advocate summit in the U.S. In the photo above, Melissa Mehaffey (center), shares a laugh with fellow hereditary angioedema (HAE) patients at the meeting held near CSL Behring’s offices in King of Prussia, Pennsylvania.

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The unique gathering allowed patients to connect both with people living with their same condition and other rare diseases. Studies have shown that patients with a rare disease can face similar issues, even though their specific condition may be different. In addition to patients living with HAE, patients living with primary immunodeficiency, chronic inflammatory demyelinating polyneuropathy (CIDP), hemophilia, von Willebrand disease (VWD) and Alpha-1 antitrypsin deficiency participated in the multi-day event.

At the meeting’s close, Janet Reimund, CSL Behring’s Senior Manager of Patient Engagement, called the attendees some of the “bravest people in the world.”