Meeting a family in Virginia

Last week we were blessed to be connected with Virginia and Andrea di Lallo, in Bologna, and their amazing children, Lavinia (7) and Valerio (5). Both children have MVA, but they are the happiest kids!

Our search for MVA families and patients is global. It has to be due to the ultra-rare nature of the condition. We now have direct contact with 5 children though.

With only ~50 reported cases worldwide, this now represents 10% of all known cases. Although, we think it’s very reasonable to deduce that the actual number is a lot higher (maybe 200+ globally?). This is the challenge with a very rare and unknown condition, that’s not routinely tested for and, (until now) hasn’t had a “community” to belong to.

The small, but mighty MVA Society is changing the landscape for our community. Our search for more patients, families, researchers, scientists, pharma & biotechs and clinicians is gaining momentum.