Our Stories
See the Impact of Rare New England
The families featured below can find community and resources because of the support of donors like you, please consider giving to Rare New England to make a positive impact on families touched by rare diseases.
Kyrie’s Story
At just 14 weeks pregnant, Nicole and Garrick received news that would change their lives forever: their son had a rare birth defect called Gastroschisis.
Ellery’s Story
Ellery’s rare disease journey with Opsoclonus Myoclonus Ataxia Syndrome (OMAS) has been filled with uncertainty, resilience, and unexpected strength.
Zoli’s Story
At first, the news didn't seem alarming, but follow-up tests confirmed the diagnosis: Zoli had ALD, a rare genetic condition we had never heard of, one that turned our world upside down.
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