The knowledge and diagnosis of a rare disease can be a frightening time in anyone’s life. However, through education and through connecting to others, support - and hope - is abundant.

“When I started looking at the stats and facts about Rare Disease...that was my catalyst to say, ‘This is the largest disease community on the planet, more than all cancers and AIDS combined, 30 million people here in the US, 350 million people worldwide.’ My big question marks were, ‘Why in the heck isn’t anyone talking about it? Why aren’t we hearing about it in mainstream media? Why aren’t there more resources available for these families?'” - Nicole Boice.