Knowing where to go for information about the condition that impacts you or your family can be daunting or confusing. It’s difficult to know what a reputable and credible source may be. Over time, you will find yourself becoming an expert, even knowing more than many healthcare providers. These resources can help guide you on where you can look to get educated and find support and advice.
Rare Experiences
Connecting with others with similar experiences is one of the best ways to learn and find advice. Read these stories and connect with others through advocacy organizations.
Coming Soon
We’d love to hear your story and add you to our community of rare experiences.
