Understanding what shapes access and policy empowers us to confidently engage in topics that impact our lives, and provides researchers and health care professionals with patient insights that result in improved diagnostics, primary care and therapies.


As HPP patients navigate their passage from diagnosis, to primary care, to therapy, many “participants” become part of their journey, up front or behind the scenes. Most have deliberate systems of principles to guide decisions and achieve rational outcomes that at times, may seem bewildering. We hope to unravel some of the mystery of these procedures and governance. We also provide awareness (under Engage), of how you can have a voice in the decisions that impact your ability to live well with HPP.


Our ultimate vision may be a lofty one – to see every patient living a productive life - every caregiver with lots of support, national, established guidelines and protocols, evidence-informed care, detection at birth and equitable access to therapies. Yet, we believe our cause is a worthy one and that by working together with patients, caregivers, health care professionals, government and industry, we can bring real positive change into the lives of those affected by HPP and the families and communities that care for them.