Top Three Ways to Advocate for Your Child

Raising a child with a rare disease few people recognize or understand can be extremely difficult.

Oftentimes you will become an advocate without even realizing it—educating loved ones, friends, and community members about galactosemia to keep your child(ren) safe—and this skill can be readily transferred to advocacy with policymakers, regulators, and the media.

To heighten understanding, research, and funding for galactosemia in the quest for a treatment and, ultimately, a cure, we need to make our voices heard…and that can be as easy as 1, 2, 3.

1. Connect with other galactosemia and rare disease families

By engaging with the Galactosemia Foundation and other rare disease organizations, you can be a part of our collective voice for change. Ten years ago, there were no clinical trials for galactosemia. Now, we have multiple. Help us keep the momentum going!

2. Tell your story

Your willingness to share what it’s like to care for a child with galactosemia is the most effective way to highlight the need for a treatment. Your personal story can poignantly underscore the reasons why people living with galactosemia deserve the same attention, research, and resources as those with more common diseases. Lawmakers, regulators, and reporters need to hear from community members about causes they champion.

3. Be present

There are fewer families with children with galactosemia, so we need to stick together. Attend the Galactosemia Foundation conference, volunteer for a committee, help a newly diagnosed family along after you hit your stride post diagnosis (believe us, that day will come). It all makes a difference!