There are typically two conferences a year: One in the US and one in the UK. Both are a chance for families to meet (a rare occurrence, considering the rarity of the disease and how far apart families are typically) and are a chance for researchers to share current (often unpublished) research.
If you get a chance to go to one, you should. Because the research is often unpublished, it’s unlikely to be shared digitally or online. There is typically a caveat to the researchers speaking, which is that the research not be shared.