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Advocating for our Community
Advocate Now!
We know advocacy can be time consuming and overwhelming, but it is important that our community shares their personal experience with galactosemia and the need for a treatment.
It is going to take our entire community to help us get the attention of the FDA and let them know that we have waited long enough for treatment. There are many ways you can advocate.
Rare diseases need strong voices. Here are ways you can advocate for our community.
EveryLife Foundation: EveryLife Foundation for Rare Diseases and RDLA – Rare Disease Legislative Advocates
Join our advocacy team: E-mail Gillian Sapia at Advocacy@galactosemia.org
Ask your congressman to join the Rare Disease congressional Caucus here.