Connecting rare disease patients globally across 5 languages
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.
The purpose of the federation is to unite all AHC patient organizations in Europe, to create a synergy and a critical mass in order to achieve the following objectives:
The aim of this website is to act as a resource for families affected by AHC in Ireland and also as a contact point for families affected by AHC worldwide
EUROPEAN NETWORK FOR RESEARCH ON ALTERNATING HEMIPLEGIA
The AHC association of Iceland is a non-profit organization offering support for affected patients and their families and is run by the great man Siggi