As Rare Disease Day 2016 is today (February 29), it is only fitting that I talk about my experience speaking at the Alliance for Regenerative Medicine’s (ARM) Roundtable for Rare Disease (alliancerm.org/event/arms-rare-disease-roundtable) at the end of January. This event was cohosted by FARA. Along with doing much of the emceeing, FARA’s (our) Ron Bartek also chaired a panel discussion on collaborating on cures for rare disease.
When Jen Farmer asked me to speak, I was incredibly honored and immediately said yes. Then, I realized I had to say something and in order to say it well, I should know what regenerative medicine is and what ARM does. As the name regenerative indicates, regenerative medicine is focused on making organs and tissue that have been damaged by disease, injury, and aging well again. (Three cheers for that I say!!) This may sound like medicine as we know it, but what makes this approach unique is that it is inclusive of not just biological science, but also technological and chemical science. So, it doesn’t let medicine lay claim to improving the lives of patients, it says we need lots of collaborators to do that and we shouldn’t just be looking to one field. Collaborators. That’s what ARM does (FARA too!), advance regenerative medicine by bringing potential and active collaborators together. And, at its essence, to me, that is what the roundtable was about. How do patient advocates, patient groups, academics, and pharmaceutical companies collaborate to cure disease?