New Hope for Patients with Black Bone Disease - Nick Sireau, CEO and Chair of Trustees at the AKU Society

Just a few weeks ago we shared the story of John Crowley’s family and their battle with Pompe disease on Raise the Line, and in this episode, we’re honored to share another remarkable story of a rare disease parent and the contributions they've made beyond their efforts to help their own loved ones.  Nick Sireau is the CEO and Chair of Trustees of the AKU Society, an award-winning patient group that helps people with Alkaptonuria (AKU), sometimes referred to as black bone disease, a rare disorder affecting both of his children. In AKU patients, a build-up of acid in the body leads to a painful breakdown of bones and joints, and serious heart complications. Nick’s tireless efforts have led to some extraordinary results, including making the very first treatment for AKU available.  Nick is also Founder and Chair of Orchard, a medical charity that works to develop new and better treatments for obsessive-compulsive disorder (OCD), a misunderstood mental illness that Nick has battled for many years. Join host Shiv Gaglani for a fascinating look at the impact one parent has had on the welfare of so many, and for advice for those weighing career options in the healthcare field.  “There are hundreds, if not thousands of these ultra-rare diseases that just nobody is touching.”

Mentioned in this episode:

https://akusociety.org/
https://www.orchardocd.org/

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