Advocacy
Advocacy covers all sorts of activities for PKDIA, from helping find a physician to seeking out information to help you decide upon treatments.
Overall, our aim is to help you in whichever direction you wish to go.
One key way to help you advocate for yourself is to join our social media groups. We link people with PK Deficiency across the globe (and their families)
Examples of where we have advocated on your behalf
A talk that Carl Lander gave to the 2nd RAIN Summit in 2024 linking Peak Registry data to advoacting for yourself.
A talk that Carl Lander gave at the Metabolic Support UK Living Well Symposium 2024 about how having a life-limiting condition doesn't have to limit life. (In his role as Co-Chair of MSUK).
Sometimes you may need to have your diagnosis confirmed, for example to apply for a scholarship. Open the link below and the file will download automatically send it to your physician for completion