Galactosemia Pediatric Patient Stories

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Galactosemia - A family's fight against this rare orphan disease

After their son Oliver was diagnosed with the rare genetic disorder galactosemia, Jamie and Erin Siminoff decided they would devote their life to helping to cure this disease and many others like it.

A rare disease is one that affects fewer than 200,000 people, but there are nearly 7,000 rare diseases affecting about 30 million Americans or one in ten.

Here at Boston Children's Hospital, the Manton Center for Orphan Disease Research was created to develop new methods for understanding, diagnosing and treating unusual diseases and to apply this knowledge to make fundamental scientific advances with broad implications for human health.

This video shares the story of a dedicated family and their son Oliver's battle with galactosemia.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337