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Bob's rare disease road trip


Bob has been very busy over the last few weeks, as he travelled across the world to continue the all important conversation about rare diseases. His road trip started in Canada. We caught up with Bob to find out what he's been up to.

I have been away in Canada and the USA for 15 days advocating for our MPS and Rare Families. I was invited to speak at the Canadian MPS Society Conference alongside some legends such as Mark Dant and Kirsten Harkins. My venture didn't stop there as I went to see Denali in San Francisco to discuss the therapies they are developing for our communities.

It was a fantastic visit to Denali HQ in San Francisco. Really inspiring people and really inspiring science. We should all spend some time thanking the scientists in the labs who turn science fiction into science fact. Simply thank you for what you are doing for our families.

Everyday I am reminded what a privilege it is to fight for better outcomes and treatments for "Rare" families.

Next it was Rockville to be with Regenxbio and do the same thing with yet another fabulous bunch. Finally we had the International MPS Network Meeting in Washington DC. This was an opportunity for all MPS patient advocacy groups worldwide to work together. I have been lucky to be on the whole trip with Kim Angel and Amira Awada and god knows how they put up with me and my dress sense!

Every day I am reminded what a privilege it is to fight for better outcomes and treatments for "Rare" families . My own "Rare" family pays a price for this but understand the need to do it. I am also lucky to meet with great patient organisation leaders who are such good friends. It has been amazing to see my French brother Steph Antolin after the Covid years.

I live by the "No one left behind " motto but the last 15 days has left me spent and a snail would leave me behind today. So back to UK and then pick myself up and go faster and push harder for MPS, Fabry and our other "Rare" families.

The MPS Society is changing the world of Rare Diseases one conversation at a time.

Bob Stevens

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