Support for Families

At MacPac Foundation, we understand the unique challenges of being a family within the rare disease community — specifically, being a family affected by HBSL.

We believe that families living with HBSL should be able to place all their focus on supporting each other and appreciating life’s most precious moments without the financial strain from necessary treatments, equipment, therapies, and travel to appointments. We are heartbroken that children living with HBSL go without access to equipment and treatments that promise to increase the functionality of daily life because of a lack of financial resources.

MacPac Foundation strives to lessen the burden on families affected by HBSL, allowing them to focus on what really matters: supporting, celebrating, and encouraging each other through the challenges presented by HBSL.