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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.

• July 28, 2026 Research Advocacy Beyond Childhood: The Hidden Struggles Facing Caregivers of Adults with Angelman Syndrome Angelman syndrome demands lifelong, intensive caregiving, placing emotional and financial burdens on families worldwide. Read more >
• July 28, 2026 Citizenship Policy Why the WHO Global Action Plan Matters for Rare Disease Communities Jane Cooper, senior vice president and region head, Europe, Middle East and Africa, and Eduardo Thompson, senior vice president and region head, Latin America, share Ultragenyx’s contribution to the development of a WHO Global Action Plan for Rare Diseases. Read more >
• May 19, 2026 Citizenship One Rare Nation: Ten Years Advancing Our Mission in Europe, Middle East and Africa To mark 10 years of Ultragenyx’s in Europe, Middle East and Africa, we reflect on our steady expansion and our unwavering commitment to reach more people living with rare and ultra-rare diseases around the world. Read more >