In this episode David shares his story on his ultra-rare condition called Occipital Horn Syndrome – he was diagnosed with this at the age of 26 at Addenbrookes in Cambridge. He has been doing talks on rare diseases life for the last 8 years at various events and conferences globally. Covering many different areas, such as the science behind Occipital Horn Syndrome, what it’s like to go through all the education milestones when managing a complicated ultra-rare disease, how he has navigated employment with a rare disease; the diagnosis journey, and much more! For the last 4 years, David has been working for Rare Revolution Magazine - a magazine focusing on rare diseases in the UK. Through his role in also Business Development – he has met so many fantastic rare disease advocates and industry professionals from all over the globe. Alongside his work at the magazine and speaking, David volunteers for a cause close to his heart - Great Ormond Street Hospital. A famous pediatric hospital in London. David also joined Mitrofanoff Support last year as one of the trustees. David has been using a Mitrofanoff catheter since the age of 7, back in 1995, which was carried out by Great Ormond Street Hospital in London.

We dive into his journey, what it was like for his parents and his independence in taking ownership of his medical condition, and the importance of taking risks despite the challenges he faced to live life to the fullest. To connect with David, visit his IG page David (@occipitalhornadvocate).To stay connected, visit me on Instagram (@Strongandrareparenting), and/or send me an email at info. strongeandrareparents.com

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