How can communication be improved for those affected by rare disease in Northern Ireland?

The voice of those affected by rare disease is a significant one, being 1 in 17 of the people who live in the United Kingdom. So then why do we not hear this voice, why is it that rare disease is an unfamiliar term to so many? The trouble lies in the fact that although together this community are large in number they each feel isolated by a disease which often no-one around them understands, so where can they find support? How can they access information? And how will they get their voice heard?