I’m sitting in a hotel room in Washington. It’s pouring outside. I woke up at a ridiculously early hour because of the jetlag.
But it’s been an excellent start to the day. I had breakfast with an AKU patient and biotech entrepreneur who happens to be in Washington for another conference this week. She’s secretary of the newly formed AKU Society North America and is full of excellent ideas on how we can drive things forward.
We’re very fortunate in the AKU movement. We have a network of particularly dynamic patients, many of them with all kinds of backgrounds in medicine and biotech. They’re willing to work hard for the good of the whole community.
It also emphasised again for me the importance of face to face contact. When you’re building a global movement for a rare disease, you need to go out there and meet people. It’s the only way to generate the strong momentum needed.
The problem, of course, is finding the time and money to do so. International travel isn’t cheap. It’s also tiring and time consuming.
I’m increasingly realising that there’s a need for some kind of overarching rare disease foundation that would provide assistance to rare disease patient groups for activities such as international travel and workshops. France has the Fondation Groupama, exclusively funds rare disease patient groups, which is excellent. I haven’t yet found its equivalent in the UK or elsewhere.