Many of us feel like once we have our diagnosis, we should know what to do next and can become exasperated when it leads to more confusion. We think the new label should answer our questions, but we still need to understand recommendations, clarify priorities, and prepare for further decisions.

Then we can get stuck endlessly researching with the hope that more information will find the one answer that will make everything clear. It can feel like we have to understand the medical details as well as our clinicians to confidently participate in our healthcare decision making.

At beyondURdiagnosis we feel rather than constantly searching for answers, we first need to go through a process of identifying what we understand, what remains unresolved, and which questions would help us move forward.

In our experience, we absolutely can participate meaningfully in our care by describing our experience, explaining our priorities, and asking for clarification without needing to become a clinician.

That’s where we can help. You may not need more answers, but you won’t know until you first understand what questions you still have.

We won’t give you medical advice, but we will distill the scientific evidence available and offer frameworks for you to organise what you understand, what you need to still investigate, and how you can decide on the right care for you given your priorities.

We do this through clear, evidence-informed articles and videos to help you prepare for your next healthcare conversation.