Welcome to the first issue of my newsletter! 🚀
I’m going to use these moments to share updates about rare disease research, startups and innovation, my passion for turning problems into structural solutions and my personal journey as a patient and entrepreneur.
Two years after the first
, there’s a new one
coming in San Francisco this September, where researchers and hackers will try to find new ways to look at medical- and biological data. If you don’t remember the last one (where I shared my DNA with 300 hackers and researchers) make sure to watch the short video
by Boonsri Srinivasan to get a sense of the ‘vibe’ there.
Secondly, I’d like to mention that Chan Zuckerberg Initiative
is committing to help fight rare diseases, which is great news for the community. You can find some information and videos they’ve recently shared below.
Lastly, I’m pleased to announce that RDMD
has recently passed the 500 patients milestone. It’s incredible to see the growth, passion and continuous learnings of the community and the team. When I started working on it two years ago there was nothing. Now, we’re directly involving hundreds of patients and researchers to change the way trials are run and designed in rare disease. Clinical trials remain a big bottleneck in successfully bringing treatments to the market, and we all need continue to push innovation and patient involvement to make this process better.
There’s so much to do in the world of genetic diseases, and while each rare condition is a little different, we have to find ways to get the common denominators and ultimately help everyone in a structural way. There are opportunities though, and technology is not standing still either, but I can’t stress enough how important it is to work together, let go of our egos and have patients involved to drive and accelerate the development of their own therapies. To be continued!
ps. If you think some of this content can be interesting for someone else, feel free to forward this email to them.