Rare perspective blog
Insights on our approach to collaborating with the rare disease community, supporting our teammates at Ultragenyx, and developing new therapies for rare diseases.
Latest posts
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November 14, 2025
Research Advocacy
Misunderstood. Isolated. Exhausted.
Caregivers of children with Sanfilippo syndrome reflect on the impact the ultra-rare disease has on families.
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June 25, 2025
Advocacy
A Mother’s Mission: Inspiring Change for Rare Disease Families
Advocate Jennifer Siedman reflects on how she continues to honor her son Ben’s legacy through her work with rare families
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June 10, 2025
Culture
Beyond Words on Walls: How Living Values Built a Leading Rare Disease Company
Fifteen years. Countless breakthroughs. Lives changed forever. All supported by a culture where values aren’t just preached, they’re practiced.
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