PURA Syndrome Foundation
The global family foundation for PURA syndrome: family support, ambassadors, sibling and grandparent outreach, the annual PURA conference and the global patient registry. Registered as a US 501(c)(3) and active with UK families.
| Type | Patient organisation |
|---|---|
| Area | International (UK families supported) |
| Sources | Official website · Registration details · Ambassador programme |
| Last checked | 1 November 2026 |
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