As part of our ongoing partnership with Findacure, an organisation that supports patient- and caregiver-led charities for rare diseases, CHR has recently sponsored three “RareChats” – a new Findacure initiative providing the opportunity for rare disease patient groups to share their thoughts and experiences, in a virtual chat room and with an informal atmosphere.
The CHR-sponsored RareChats took place between September and October 2020, focusing on three different themes, suggested by the Findacure community. The first one (September 16th) explored ways in which charities can engage younger people, which comprise a significant part of the rare disease patient group. The second one (October 7th) discussed the importance of building a strong network of contacts and collaborators to help patient groups achieve their goals, touching also on practical aspects such as the use of digital tools and platforms. Finally, the third one (October 28th) focused on the use of search engine optimisation and its beneficial impact on raising brand visibility and awareness.
Although the idea of RareChats was developed out of a need to keep the wider disease community connected during the pandemic, the sessions have developed into a forum that allows Findacure and its rare disease patient groups to benefit from each other’s experience and knowledge. We are very happy that CHR’s contribution has supported three out of five RareChats to date, thus helping to turn this new initiative into such a useful offering!