Communication, discussion, and support.
Here at MacPac Foundation, we believe that open discussion and sharing information is crucial to finding a cure for HBSL. We strive to create an open discussion and honest information sharing base, so that patients, caregivers, scientists, doctors, and researchers all have access to the same information.
As a family, we also know the hardships and challenges that come with living with a rare disease. Financial support for necessary equipment, treatment, medication, therapies, travel, and appointments can be hard to come by. At MacPac Foundation, we are here to support our researchers and scientists, but also our families. Families affected by HBSL can apply to grants for financial support through MacPac Foundation.
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Janice McLaughlin
CEO, Founder, Parent of children with HBSL