As a rare disease advocate and mom, I love engaging with members of the community with different backgrounds and stories. By sharing stories, we can all learn more about one another, raise awareness, and work toward a change for the future. When I launched this website in August 2022, I never imagined inspiring as many as I have.
Although I wish we were not part of the rare disease community; I have accepted that's where we are and hope that our story continues to inspire members of the community. I will never claim to know everything, but I welcome the opportunity to share my experience.
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