In early 2023, a year after my son was diagnosed with Prader-Willi syndrome (PWS), I began experimenting with newly emerging artificial intelligence (AI) tools to support our family’s care journey. They showed promise but offered little practical help at the time. That changed dramatically last year, when large language models (LLMs) and other AI services became significantly more powerful. I now use them regularly as a caregiver, advocate and researcher in the rare disease space.
