Questions to Ask your Providers

UDN PEER created a document entitled “Questions to Ask” that aims to help individuals formulate the next steps of their undiagnosed journey and communicate with their healthcare team. We have different sections based on whether a genetic diagnosis was/was not given.

Some example questions are:

• Will they continue to reanalyze/re-review your data? Some programs have the funding and resources to reanalyze your data every year or two, while others do not. It’s good to at least know what they might do.
• Are there any doctors who specialize in treating this disease, or this type of disease? This is a tough one depending on where you live, but the National Organization of Rare Diseases (NORD). You may want to look for clinics or doctors that specialize in certain types of rare diseases (e.g., mitochondrial diseases) or broader disease categories (e.g., muscular dystrophies) that relate to your specific diagnosis. If there are not currently any therapies for the specific genetic diagnosis, making sure you have good care coordination can help to manage symptoms.

https://docs.google.com/document/d/1aKrFMCYLi7gbrs-3blkjrgOk9__UtVEa8Xh_eSGADbc/edit#