RareConnect is an online social network for patients and families and is a safe space where individuals affected by rare diseases can connect with each other, share common experiences, and find helpful information and resources. Organised into disease specific communities, the platform involves patient associations in the governance and growth of each community. Translation of stories and forum posts is done by human translators from a distributed online network. With this unique feature, patients are engaging in conversations with others in languages they do not even speak themselves.
A Non-Profit organization, Cure AHC exists to find a cure for Alternating Hemiplegia of Childhood (AHC), a rare and painful children’s neurological disorder, by raising awareness & fundraising and to facilitate the collaborative research needed to discover effective treatments and a cure for every case of Alternating Hemiplegia of Childhood (AHC) worldwide.