Finding a diagnosis can be challenging. It can take several years for people living with a rare condition. If you feel like something is wrong, but don’t know where to start, or you’ve been through several doctors and don’t know what to do next, these resources may be able to help guide you on the path to answers and care.
Rare Experiences
You are not alone. Read other rare experiences and how patients and families have struggled and advocated to secure a diagnosis.
Ann
Tumor-induced Osteomalacia (TIO)“It’s okay to say, ‘I’m having a really hard time,’ but within that to say, ‘Are there little things I could do to start to make it better?’”
Mason
Angelman Syndrome (AS)“I’m incredibly hopeful for what the future holds and excited to brag about all of Mason’s future accomplishments.”
